PAIN with PURPOSE

Life with Small Fiber Neuropathy, Ehlers-Danlos Syndrome Type III, Mast Cell Activation, Dysautonomia, Mitochondrial DNA Depletion Syndrome, and Wilson’s Disease.

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And we know that for those who love God, all things work together for good, for those who are called according to his purpose. Romans 8:28

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PAIN with PURPOSE

Life with Small Fiber Neuropathy, Ehlers-Danlos Syndrome Type III, Mast Cell Activation, Dysautonomia, and Mitochondrial DNA Depletion Syndrome

LEARN MORE

And we know that for those who love God, all things work together for good, for those who are called according to his purpose. Romans 8:28

Finding Joy 

and purpose 

Amid Pain

Hi! I’m so happy you’re here! :) My name is Kerissa, and I live in the beautiful Pacific Northwest. I started Pain With Purpose to mainly share medical updates and prayer requests with my close friends and family. But it soon became more than that. Over the years, friends and strangers alike have commented on my posts or sent emails to say that my blog has encouraged and inspired them immensely to trust in the Lord and not give up in the midst of their trials! I hope and pray Pain With Purpose continues to be a testament that God can use our pain for His glory and good purposes, even when we may not be able to see that right away. 

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“God, who foresaw your tribulation, has specially armed you to go through it, not without pain but WITHOUT stain.”

“God, who foresaw your tribulation, has specially armed you to go through it, not without pain but WITHOUT stain.”

C.S. Lewis

 The latest 

Encouraging

& Insightful Journal Entries

 The latest 

Encouraging & Insightful Journal Entries

Catch 22

By Kerissa Lee • November 17, 2025
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. ❤️ 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. 🥹 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. 😢 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. 😞 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. ❤️ 

October prayer request

By Kerissa Lee • October 19, 2025
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. 🙁 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. 😢 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. ❤️

Thank you! (+ a prayer request)

By Kerissa Lee • October 4, 2025
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." James 1:2-3

 The latest 

Encouraging

& Insightful Journal Entries

 The latest 

Encouraging & Insightful Journal Entries

Catch 22

By Kerissa Lee • November 17, 2025
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. ❤️ 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. 🥹 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. 😢 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. 😞 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. ❤️ 

October prayer request

By Kerissa Lee • October 19, 2025
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. 🙁 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. 😢 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. ❤️

Thank you! (+ a prayer request)

By Kerissa Lee • October 4, 2025
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." James 1:2-3

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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. ❤️ 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. ? 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. Continued below. ?? #suffering #painwithpurpose #mitochondrialdisease #scriptureart #handletteredtruth #shepaintstruth #ipadlettering
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. ❤️ 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. 🥹 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. Continued below. 👇🏻 #suffering #painwithpurpose #mitochondrialdisease #scriptureart #handletteredtruth #shepaintstruth #ipadlettering
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. ? 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. ? 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. ❤️ #suffering #painwithpurpose #mitochondrialdisease #scriptureart #ipadlettering #shepaintstruth #psalm119
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. 🙁 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. 😢 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. ❤️ #suffering #painwithpurpose #mitochondrialdisease #scriptureart #ipadlettering #shepaintstruth #psalm119
Dear friends, I just wanted to say a big “thank you!” to all of you who placed an order from my new shop!! In just 2 days, I was able to sell more than 110 cards!! ? I’ve received such sweet words about the store itself which was so nice to hear! Please know your kindness and thoughtfulness in placing an order truly encouraged my heart and is such a blessing—this definitely wouldn’t have been possible without your loving support! ❤️ I saw my neuro-ophthalmologist this past week for my annual visit to check up on the eye muscle paralysis I have in both eyes (called external ophthalmoplegia). I first saw the resident, and he asked me a startling question: have I had any strokes lately? I was totally not expecting that! Sadly, during the exam, something was found in my right eye. There’s a piece of plaque that’s stuck in a small artery in my right retina. ? They explained that it most likely traveled up, and they’re concerned that more tiny pieces could travel up to my retina and cause blindness. So I had to get labs drawn to check my cholesterol level, and I also have to get a heart echocardiogram (I just had one this past March) and a venous duplex carotid neck ultrasound done. They said this can even happen with normal cholesterol levels or normal scans, though.. Regardless, it’s rare, and they haven’t seen this in someone my age.. It’s not fun being “rare.” ? Continued below. ⬇️
Dear friends, I just wanted to say a big “thank you!” to all of you who placed an order from my new shop!! In just 2 days, I was able to sell more than 110 cards!! 🥰 I’ve received such sweet words about the store itself which was so nice to hear! Please know your kindness and thoughtfulness in placing an order truly encouraged my heart and is such a blessing—this definitely wouldn’t have been possible without your loving support! ❤️ I saw my neuro-ophthalmologist this past week for my annual visit to check up on the eye muscle paralysis I have in both eyes (called external ophthalmoplegia). I first saw the resident, and he asked me a startling question: have I had any strokes lately? I was totally not expecting that! Sadly, during the exam, something was found in my right eye. There’s a piece of plaque that’s stuck in a small artery in my right retina. 🥺 They explained that it most likely traveled up, and they’re concerned that more tiny pieces could travel up to my retina and cause blindness. So I had to get labs drawn to check my cholesterol level, and I also have to get a heart echocardiogram (I just had one this past March) and a venous duplex carotid neck ultrasound done. They said this can even happen with normal cholesterol levels or normal scans, though.. Regardless, it’s rare, and they haven’t seen this in someone my age.. It’s not fun being “rare.” 💔 Continued below. ⬇️
Dear friends, It seemed like it would never happen, so I’m very excited to share that my store is officially open! Since I’m new to this e-commerce platform, I would so appreciate your patience and understanding if any problems or technical issues pop up when placing an order.. ❤️ Something important to note: regarding shipping, it can only be to the U.S. and there’s a $3.95 flat rate shipping fee for anything that’s a total of 0.25 lbs or less. I weighed my items, and 0.25 lbs is the equivalent of about 8 notecards! Anything more than that unfortunately switches to priority shipping. ? But, for those who are local to me, you can bypass the shipping fee and pick your order up if you’d like! Just text/call or shoot me an email if that’s up your alley! ? I can be reached at painwithpurpose.by.kerissa@gmail.com. To celebrate this grand opening, I wanted to offer a big sale! My upcoming 33rd birthday is next week on October 7th! ? So please use the code 33BDAY (at checkout) to receive 33% off of your total order! ?✨ If you would like to pick up your order, I can apply the discount manually.. This deal is good for 1 week through 10/7/2025 and ends that day at 11:59 PM PST. *once per customer & while items last (first come, first served)* Continued below. ??
Dear friends, It seemed like it would never happen, so I’m very excited to share that my store is officially open! Since I’m new to this e-commerce platform, I would so appreciate your patience and understanding if any problems or technical issues pop up when placing an order.. ❤️ Something important to note: regarding shipping, it can only be to the U.S. and there’s a $3.95 flat rate shipping fee for anything that’s a total of 0.25 lbs or less. I weighed my items, and 0.25 lbs is the equivalent of about 8 notecards! Anything more than that unfortunately switches to priority shipping. 😕 But, for those who are local to me, you can bypass the shipping fee and pick your order up if you’d like! Just text/call or shoot me an email if that’s up your alley! 😊 I can be reached at painwithpurpose.by.kerissa@gmail.com. To celebrate this grand opening, I wanted to offer a big sale! My upcoming 33rd birthday is next week on October 7th! 😉 So please use the code 33BDAY (at checkout) to receive 33% off of your total order! 😍✨ If you would like to pick up your order, I can apply the discount manually.. This deal is good for 1 week through 10/7/2025 and ends that day at 11:59 PM PST. *once per customer & while items last (first come, first served)* Continued below. 👇🏻
Dear friends, These last several months, I’ve been working hard every day, making sure my Pain With Purpose shop is ready to be officially opened. Not only have I been creating art daily for new notecard, bookmark, and magnet designs, but I’m also using an e-commerce site that’s different than Etsy because Etsy sadly has so many fees.. It’s taken a lot of time learning the ins and outs of the new site on top of listing every single item with its description, picture, quantity, and weight—my mind is blown by how much is involved! Definitely makes me appreciate small shops even more. ❤️ I’ve also sadly had to deal with numerous challenges from my supplier who prints the notecards. They did an amazing job in the past, but for some reason, the quality of their printing started showing issues, so I’ve been on the phone countless times to get those resolved. All that to say, I’m so excited to share that, Lord willing, my store will finally be opening at the end of September. ? I hope you’re excited like I am! Now for the good and not-so-good medical update.. ⬇️
Dear friends, These last several months, I’ve been working hard every day, making sure my Pain With Purpose shop is ready to be officially opened. Not only have I been creating art daily for new notecard, bookmark, and magnet designs, but I’m also using an e-commerce site that’s different than Etsy because Etsy sadly has so many fees.. It’s taken a lot of time learning the ins and outs of the new site on top of listing every single item with its description, picture, quantity, and weight—my mind is blown by how much is involved! Definitely makes me appreciate small shops even more. ❤️ I’ve also sadly had to deal with numerous challenges from my supplier who prints the notecards. They did an amazing job in the past, but for some reason, the quality of their printing started showing issues, so I’ve been on the phone countless times to get those resolved. All that to say, I’m so excited to share that, Lord willing, my store will finally be opening at the end of September. 😍 I hope you’re excited like I am! Now for the good and not-so-good medical update.. ⬇️
Hi friends, I just wanted to let you know that my “consent call” with the UDN genetic counselor went well a few weeks ago. She explained what the process is like for those who are accepted into the study. The first step is an appointment with a biochemical geneticist at UW, but because I don’t currently need additional tests (like a muscle biopsy), this appointment can happen via telemedicine. That will be on July 21st! Once I have that visit, he will form a plan and discuss it with the UDN principal study investigators. :) I unfortunately had to reschedule my tube change last month because my muscles were still feeling pretty weak from the moderate “mito crash” that happened in May, so Lord willing, it will now be replaced on July 25th. Would appreciate your prayers once again as these tube changes are always so painful.. ? Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease #watercolorlettering #psalmart #scriptureart #ipadlettering #shepaintstruth
Hi friends, I just wanted to let you know that my “consent call” with the UDN genetic counselor went well a few weeks ago. She explained what the process is like for those who are accepted into the study. The first step is an appointment with a biochemical geneticist at UW, but because I don’t currently need additional tests (like a muscle biopsy), this appointment can happen via telemedicine. That will be on July 21st! Once I have that visit, he will form a plan and discuss it with the UDN principal study investigators. :) I unfortunately had to reschedule my tube change last month because my muscles were still feeling pretty weak from the moderate “mito crash” that happened in May, so Lord willing, it will now be replaced on July 25th. Would appreciate your prayers once again as these tube changes are always so painful.. 😥 Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease #watercolorlettering #psalmart #scriptureart #ipadlettering #shepaintstruth
Weeping may tarry for the night, but joy comes with the morning. -Psalm 30:5 Dear friends, I was going to start off this update with some rough news (which I’ll share below), but I just received an important phone call this afternoon. God knew my heart was really struggling and that it needed some encouragement. The news is that I GOT ACCEPTED to the Undiagnosed Diseases Network through Harvard!!! ?? Just want to clarify that not every accepted patient finds the disease-causing gene, but it’s still so amazing that my case got accepted in the first place! All praise and glory goes to God!!! ❤️ Thank you so much for praying for this, too. ? I have a “consent call” coming soon where I’ll learn what the next step is. :) Continued below ⬇️ #suffering #painwithpurpose #mitochondrialdisease #psalmart #ipadlettering #undiagnoseddiseasesnetwork
Weeping may tarry for the night, but joy comes with the morning. -Psalm 30:5 Dear friends, I was going to start off this update with some rough news (which I’ll share below), but I just received an important phone call this afternoon. God knew my heart was really struggling and that it needed some encouragement. The news is that I GOT ACCEPTED to the Undiagnosed Diseases Network through Harvard!!! 🥹🥹 Just want to clarify that not every accepted patient finds the disease-causing gene, but it’s still so amazing that my case got accepted in the first place! All praise and glory goes to God!!! ❤️ Thank you so much for praying for this, too. 🥲 I have a “consent call” coming soon where I’ll learn what the next step is. :) Continued below ⬇️ #suffering #painwithpurpose #mitochondrialdisease #psalmart #ipadlettering #undiagnoseddiseasesnetwork
Hi, friends, I was so excited to share that after 3 weeks fighting this latest “mitochondrial crash,” I had improved quite a bit, but yesterday, the nystagmus suddenly returned, and it was so rough that I was very nauseous last night.. ? Today my eyes are droopy again. Not sure what’s going on and if I’m having a mini relapse? ? Still receiving the IV dextrose infusions every day, and I pray this is just a tiny setback with a better day tomorrow.. Mitochondria use glucose to turn it into ATP (energy), and during these flares, my body needs so much dextrose (sugar) infused straight through my port which goes directly to my heart.. I have a sweet tooth, and I was telling my mom how funny/sad it is that I can’t just eat sweet things to keep these mito flares away. ? Continued below. ⬇️ . . . . . #suffering #painwithpurpose #mitochondrialdisease #ipadlettering #watercolorlettering #scriptureart #psalmart #handletteredtruth
Hi, friends, I was so excited to share that after 3 weeks fighting this latest “mitochondrial crash,” I had improved quite a bit, but yesterday, the nystagmus suddenly returned, and it was so rough that I was very nauseous last night.. 😞 Today my eyes are droopy again. Not sure what’s going on and if I’m having a mini relapse? 😢 Still receiving the IV dextrose infusions every day, and I pray this is just a tiny setback with a better day tomorrow.. Mitochondria use glucose to turn it into ATP (energy), and during these flares, my body needs so much dextrose (sugar) infused straight through my port which goes directly to my heart.. I have a sweet tooth, and I was telling my mom how funny/sad it is that I can’t just eat sweet things to keep these mito flares away. 🫩 Continued below. ⬇️ . . . . . #suffering #painwithpurpose #mitochondrialdisease #ipadlettering #watercolorlettering #scriptureart #psalmart #handletteredtruth
How unspeakably wonderful to know that all our concerns are held in hands that bled for us. -John Newton ❤️ Dear friends, Last week, I started experiencing some “mito crash” symptoms again.. So thankful to God that this one’s mild compared to the 2 flares I had in November and December, but it’s still been a bit of a challenge in its own way. ? My dr. ordered dextrose infusions, and I’m grateful he was able to place orders quickly to nip this in the bud faster. I’ve improved in many ways (my eyes are no longer droopy, my bladder/kidneys are functioning back to normal, etc.), but my muscles are still weak/heavy, and the pain is severe—I haven’t been able to fall asleep until 5-6 AM….so very exhausted. ? Would be grateful for your prayers that I can return back to my previous baseline! I mentioned in my last post that my elbow joints have started to become painful, and I’m sad to say that both shoulder joints are now hurting as well. ? The rheumatologist said that conditions can happen gradually sometimes, and I’m wondering if that’s the case with me. Not that I want another disease, but it would be so nice to have some answers as to why I keep having crashes since something seems to be exacerbating the mitochondrial depletion.. Since January 2024, this marks my 4th one. But before January 2024, I had only one flare which was all the way back in 2020! And, that was also the first time it ever happened!! It would truly be a dream if my body could become more medically stable like it was in my 20s. ? Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease #ipadartwork #scriptureart #psalm46 #handletteredtruth
How unspeakably wonderful to know that all our concerns are held in hands that bled for us. -John Newton ❤️ Dear friends, Last week, I started experiencing some “mito crash” symptoms again.. So thankful to God that this one’s mild compared to the 2 flares I had in November and December, but it’s still been a bit of a challenge in its own way. 🥺 My dr. ordered dextrose infusions, and I’m grateful he was able to place orders quickly to nip this in the bud faster. I’ve improved in many ways (my eyes are no longer droopy, my bladder/kidneys are functioning back to normal, etc.), but my muscles are still weak/heavy, and the pain is severe—I haven’t been able to fall asleep until 5-6 AM….so very exhausted. 😞 Would be grateful for your prayers that I can return back to my previous baseline! I mentioned in my last post that my elbow joints have started to become painful, and I’m sad to say that both shoulder joints are now hurting as well. 😢 The rheumatologist said that conditions can happen gradually sometimes, and I’m wondering if that’s the case with me. Not that I want another disease, but it would be so nice to have some answers as to why I keep having crashes since something seems to be exacerbating the mitochondrial depletion.. Since January 2024, this marks my 4th one. But before January 2024, I had only one flare which was all the way back in 2020! And, that was also the first time it ever happened!! It would truly be a dream if my body could become more medically stable like it was in my 20s. 🥺 Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease #ipadartwork #scriptureart #psalm46 #handletteredtruth
“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 Dear friends, This was a hard post to write. I had 2 rough appointments recently…both just a few days apart—one with my primary care physician and the other with my neuromuscular neurologist. I broke down and cried a lot at each of them. ? It doesn’t seem like I’m improving with time, so my PCP recommended that I be seen at the center for complex diseases in Seattle, but we found out they don’t take insurance (in addition, the very specialized autonomic neurologist also in Seattle that one of my other doctors referred me to doesn’t take insurance either).. ? My doctor always shows such compassion (very thankful for him!!), and he explained that something needs to be done because I’m continuing to struggle even more. I’m starting to experience brain fog which has been difficult. If I’m searching something online, I suddenly forget what I was looking for. More than a few times now, I said something to my family, and they told me I already brought “that” up. ? My elbow joints have been so achy and painful lately. We don’t know if this is related to a slowly developing issue—the rheumatologist said sometimes symptoms can gradually develop before it becomes a full-on autoimmune disorder, and she said to watch and pay attention to any new symptoms.. I still have the second opinion with a different rheumatologist in late June.. On top of all this, I began experiencing terrible muscle spasms in my low back muscles which wake me up in the morning. ? The neurologist said this is called “spasticity” and is a muscle control disorder characterized by tight or stiff muscles and an inability to control those muscles. I’m not able to get quality rest at night due to these muscle spasms as well as the frequent central apnea episodes that occur (detailed in a previous blog post). ? Continued below. ⬇️ . . . . . #suffering #painwithpurpose #mitochondrialdisease #ipadart #shepaintstruth
“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 Dear friends, This was a hard post to write. I had 2 rough appointments recently…both just a few days apart—one with my primary care physician and the other with my neuromuscular neurologist. I broke down and cried a lot at each of them. 😭 It doesn’t seem like I’m improving with time, so my PCP recommended that I be seen at the center for complex diseases in Seattle, but we found out they don’t take insurance (in addition, the very specialized autonomic neurologist also in Seattle that one of my other doctors referred me to doesn’t take insurance either).. 😔 My doctor always shows such compassion (very thankful for him!!), and he explained that something needs to be done because I’m continuing to struggle even more. I’m starting to experience brain fog which has been difficult. If I’m searching something online, I suddenly forget what I was looking for. More than a few times now, I said something to my family, and they told me I already brought “that” up. 🥺 My elbow joints have been so achy and painful lately. We don’t know if this is related to a slowly developing issue—the rheumatologist said sometimes symptoms can gradually develop before it becomes a full-on autoimmune disorder, and she said to watch and pay attention to any new symptoms.. I still have the second opinion with a different rheumatologist in late June.. On top of all this, I began experiencing terrible muscle spasms in my low back muscles which wake me up in the morning. 😔 The neurologist said this is called “spasticity” and is a muscle control disorder characterized by tight or stiff muscles and an inability to control those muscles. I’m not able to get quality rest at night due to these muscle spasms as well as the frequent central apnea episodes that occur (detailed in a previous blog post). 😞 Continued below. ⬇️ . . . . . #suffering #painwithpurpose #mitochondrialdisease #ipadart #shepaintstruth
“If the day Jesus died was eventually called good, maybe one day our worst days could be called good, too.” -HopeHeals ❤️ #goodfriday #jesuspaiditall #painwithpurpose
“If the day Jesus died was eventually called good, maybe one day our worst days could be called good, too.” -HopeHeals ❤️ #goodfriday #jesuspaiditall #painwithpurpose
I saw Joni Eareckson Tada share on social media that today is #worldartday. ? Hard to believe, but this September will mark 8 years since I started learning how to hand letter. I’m so thankful to God for the physical strength I still have in my hands to create art. ❤️✍? It has been so therapeutic to letter Scripture and beautiful quotes on this hard journey. This piece is an old one, but I thought I’d reshare it because it’s such a reminder that God IS faithful through the good times and bad. ? I hope my art has been an encouragement to you!! ? . . . . . #painwithpurpose #suffering #handletteringart #pnwartist #ipadart #ipadlettering #moderncalligraphy #scripturetype #handletteredtruth #bibleart #shepaintstruth
I saw Joni Eareckson Tada share on social media that today is #worldartday. 😊 Hard to believe, but this September will mark 8 years since I started learning how to hand letter. I’m so thankful to God for the physical strength I still have in my hands to create art. ❤️✍🏻 It has been so therapeutic to letter Scripture and beautiful quotes on this hard journey. This piece is an old one, but I thought I’d reshare it because it’s such a reminder that God IS faithful through the good times and bad. 🥲 I hope my art has been an encouragement to you!! 💗 . . . . . #painwithpurpose #suffering #handletteringart #pnwartist #ipadart #ipadlettering #moderncalligraphy #scripturetype #handletteredtruth #bibleart #shepaintstruth
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. :( Continued below. ?? #painwithpurpose #suffering #mitochondrialdisease #ipadlettering #letteringart #martinluther
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. :( Continued below. 👇🏻 #painwithpurpose #suffering #mitochondrialdisease #ipadlettering #letteringart #martinluther
A while back, I hand lettered a bunch of quotes and verses and placed each one in a polaroid frame. Here’s the full compilation of them! Do you have a favorite? ☺️ . . . . . #kk_polaroidart #ipadart #ipadlettering #scripturetype #handletteredtruth #biblelettering #polaroids #calligraphy #letteringart #pnwartist
A while back, I hand lettered a bunch of quotes and verses and placed each one in a polaroid frame. Here’s the full compilation of them! Do you have a favorite? ☺️ . . . . . #kk_polaroidart #ipadart #ipadlettering #scripturetype #handletteredtruth #biblelettering #polaroids #calligraphy #letteringart #pnwartist
Happy first day of spring. ☺️?? This is an older piece I never shared. For many months now, it has been a challenge to create my hand lettered art due to pretty bad hand tremors. But, I saw a movement neurologist last month, and he diagnosed me with “minipolymyoclonus.” What a long word. ? He increased my anti-seizure medication, and I’m happy to share that the shaking isn’t as bad! My currently undiagnosed autoimmune issue uses up my limited energy (I see rheumatology next month), but for short periods, I’ve been trying to hand letter again, even if it’s just a word at a time. ? . . . . . #suffering #painwithpurpose #mitochondrialdisease #psalmart #ipadlettering #handletteredtruth #scripturelettering #unsplash #hopeinchrist #calligraphy
Happy first day of spring. ☺️🌱🌷 This is an older piece I never shared. For many months now, it has been a challenge to create my hand lettered art due to pretty bad hand tremors. But, I saw a movement neurologist last month, and he diagnosed me with “minipolymyoclonus.” What a long word. 😝 He increased my anti-seizure medication, and I’m happy to share that the shaking isn’t as bad! My currently undiagnosed autoimmune issue uses up my limited energy (I see rheumatology next month), but for short periods, I’ve been trying to hand letter again, even if it’s just a word at a time. 🥲 . . . . . #suffering #painwithpurpose #mitochondrialdisease #psalmart #ipadlettering #handletteredtruth #scripturelettering #unsplash #hopeinchrist #calligraphy
Hi, friends, First off, the piece of art above was hand lettered by me last year before all “this” happened. I’m sad to say that I only have 3 or 4 pieces left to share until I run out.. ? I went to see my neuromuscular neurologist in Seattle on January 8th. My neck weakness continues to progress which has been so scary. He said I need to get a neck MRI and some specific blood tests to check for polymyositis. If it is normal, though, his opinion is that this is mitochondrial disease progression. ? I haven’t seen my mitochondrial specialist in San Diego in more than 3 years (I started seeing him in 2014!), so I’m sadly no longer considered his patient. The neurologist sent a new referral to him, but I’m not sure if it will be accepted.. He’s almost 80 years old (one of the pioneers of “mitochondrial medicine”). And I don’t know if he’s cutting back on “new” patients.. Even if he did accept my case again, I’m currently not physically well enough to fly down from Oregon.. ? My quality of life continues to worsen ever since this unusual neck weakness started this past October. I know I’ve said this before, but I truly miss doing all of my favorite things (like hand lettering art) or even simple tasks (setting up my own IV infusions, vacuuming, washing hair, etc.). ? Before October, I was even starting to drive to physical therapy or the grocery store. Yes, I’m 32 and still don’t have my driver’s license due to being preoccupied fighting mitochondrial disease for almost 15 years now. I never shared the exciting news that I was able to get my driver’s permit over 2 years ago, and it was so fun to drive myself to appointments close to home. Now, I can’t do any of the above which has been difficult to process. I shed tears every now and then just thinking about all that has changed. ? Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease #ipadlettering #handletteredart
Hi, friends, First off, the piece of art above was hand lettered by me last year before all “this” happened. I’m sad to say that I only have 3 or 4 pieces left to share until I run out.. 🥺 I went to see my neuromuscular neurologist in Seattle on January 8th. My neck weakness continues to progress which has been so scary. He said I need to get a neck MRI and some specific blood tests to check for polymyositis. If it is normal, though, his opinion is that this is mitochondrial disease progression. 😔 I haven’t seen my mitochondrial specialist in San Diego in more than 3 years (I started seeing him in 2014!), so I’m sadly no longer considered his patient. The neurologist sent a new referral to him, but I’m not sure if it will be accepted.. He’s almost 80 years old (one of the pioneers of “mitochondrial medicine”). And I don’t know if he’s cutting back on “new” patients.. Even if he did accept my case again, I’m currently not physically well enough to fly down from Oregon.. 😞 My quality of life continues to worsen ever since this unusual neck weakness started this past October. I know I’ve said this before, but I truly miss doing all of my favorite things (like hand lettering art) or even simple tasks (setting up my own IV infusions, vacuuming, washing hair, etc.). 🥺 Before October, I was even starting to drive to physical therapy or the grocery store. Yes, I’m 32 and still don’t have my driver’s license due to being preoccupied fighting mitochondrial disease for almost 15 years now. I never shared the exciting news that I was able to get my driver’s permit over 2 years ago, and it was so fun to drive myself to appointments close to home. Now, I can’t do any of the above which has been difficult to process. I shed tears every now and then just thinking about all that has changed. 😢 Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease #ipadlettering #handletteredart
Happy new year from me and my family. ? Thank you so much for praying as I got over this latest mito crash from a couple weeks ago. I wanted to share that I have responded positively to the low dose steroid, and the weakness/pain in my neck does lessen when I take it. But, it unfortunately causes a bunch of side effects (especially dizziness, migraines, and insomnia), and it’s a challenge to find the right balance in not aggravating my mitochondrial disorder. As I mentioned before, this undiagnosed muscle weakness and pain in my neck is putting a lot of stress on my body, so I’ve sadly been experiencing an increase in mitochondrial symptoms. For example, you may think I look “normal” in this photo, but by the end of the day, I had worsening nystagmus and droopy eyelids (just from sitting on the couch). ? Still, I am super thankful the steroid made it possible for me to celebrate Christmas with my family this past Sunday, even though I had to lie down later that evening and miss out on playing games with everyone. I’m nervous about sitting in the car with weak neck muscles and traveling up to Seattle next week when I see my neurologist. ? Just praying my body will be able to tolerate the extra activity and not go into another rough mito crash. It’s hard to believe 2024 is pretty much over. I usually write up an annual “reflections” blog post, but I don’t really have the mental energy right now to write one.. I do want to briefly share that 2024 was THE most brutal year (with 3 mitochondrial crashes, sepsis, and 43 days in the hospital).. ? Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease #happynewyear #2025 #godisfaithful
Happy new year from me and my family. 🥰 Thank you so much for praying as I got over this latest mito crash from a couple weeks ago. I wanted to share that I have responded positively to the low dose steroid, and the weakness/pain in my neck does lessen when I take it. But, it unfortunately causes a bunch of side effects (especially dizziness, migraines, and insomnia), and it’s a challenge to find the right balance in not aggravating my mitochondrial disorder. As I mentioned before, this undiagnosed muscle weakness and pain in my neck is putting a lot of stress on my body, so I’ve sadly been experiencing an increase in mitochondrial symptoms. For example, you may think I look “normal” in this photo, but by the end of the day, I had worsening nystagmus and droopy eyelids (just from sitting on the couch). 🥺 Still, I am super thankful the steroid made it possible for me to celebrate Christmas with my family this past Sunday, even though I had to lie down later that evening and miss out on playing games with everyone. I’m nervous about sitting in the car with weak neck muscles and traveling up to Seattle next week when I see my neurologist. 😥 Just praying my body will be able to tolerate the extra activity and not go into another rough mito crash. It’s hard to believe 2024 is pretty much over. I usually write up an annual “reflections” blog post, but I don’t really have the mental energy right now to write one.. I do want to briefly share that 2024 was THE most brutal year (with 3 mitochondrial crashes, sepsis, and 43 days in the hospital).. 😭 Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease #happynewyear #2025 #godisfaithful
Hi, friends, It’s been more than a month since I last posted, and I’m sad to say that my symptoms have gotten much worse. If you missed the update, this new weakness and pain put a lot of stress on my body, to the point that I went into another rough mitochondrial crash. The week before Thanksgiving, I was directly admitted to the hospital for 7 days due to nausea, vomiting, increased pain, nystagmus, very droopy eyelids, and more.. My “mito crash” symptoms thankfully resolved after receiving continuous IV dextrose and IV levocarnitine. The hospitalist (one of the most compassionate doctors I’ve ever met) also ordered the IV steroid dexamethasone to see if it would help this unusual muscle weakness in my neck, and it did! That was an answer to prayer, but, several days after getting discharged, my neck weakness started worsening again. ? We’re not sure if it’s due to the steroid wearing off? It’s now difficult to lift my head off the pillow when lying down. I truly took for granted how vital the neck muscles are for any type of movement. ? I so miss being at my “normal” baseline and doing basic things like grocery shopping or even vacuuming. I also really miss creating hand lettered art like my old Christmas piece above from 2 years ago. ? Are you familiar with the “plank” exercise where you try to lift your abdomen off the ground horizontally as long as possible? Well, I’ve been in so much pain because it feels like I’m always doing a “plank” exercise but with my neck—it constantly aches and burns. ? Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease #handletteredart #oholynight
Hi, friends, It’s been more than a month since I last posted, and I’m sad to say that my symptoms have gotten much worse. If you missed the update, this new weakness and pain put a lot of stress on my body, to the point that I went into another rough mitochondrial crash. The week before Thanksgiving, I was directly admitted to the hospital for 7 days due to nausea, vomiting, increased pain, nystagmus, very droopy eyelids, and more.. My “mito crash” symptoms thankfully resolved after receiving continuous IV dextrose and IV levocarnitine. The hospitalist (one of the most compassionate doctors I’ve ever met) also ordered the IV steroid dexamethasone to see if it would help this unusual muscle weakness in my neck, and it did! That was an answer to prayer, but, several days after getting discharged, my neck weakness started worsening again. 😭 We’re not sure if it’s due to the steroid wearing off? It’s now difficult to lift my head off the pillow when lying down. I truly took for granted how vital the neck muscles are for any type of movement. 🥺 I so miss being at my “normal” baseline and doing basic things like grocery shopping or even vacuuming. I also really miss creating hand lettered art like my old Christmas piece above from 2 years ago. 😢 Are you familiar with the “plank” exercise where you try to lift your abdomen off the ground horizontally as long as possible? Well, I’ve been in so much pain because it feels like I’m always doing a “plank” exercise but with my neck—it constantly aches and burns. 😭 Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease #handletteredart #oholynight
3 days after we got home from Hawaii, I wrote in my last post that I started dealing with really bad muscle weakness, fatigue, and pain. This weakness is like nothing I’ve ever experienced, and it’s even worse than weakness that comes after sepsis—that’s how bad it is. :’( It’s challenging and fatiguing to do simple day-to-day activities (like filling a cup of water or holding a book..). I wasn’t even very active before, but I was still much more functional than this, so it’s been devastating to pretty much be recliner/bed-bound. ? If I knew that my strength would definitely return soon, this would be so much easier to bear. But I don’t know, so I feel like I’m in the middle of a desert with no water or end in sight. ? I saw my PCP again today—he noted that I have diffuse weakness. ? I had 12 different labs drawn afterwards to check so many vitamin/mineral levels, antibodies, inflammatory markers, etc. He said if everything is normal, we might have to do a muscle biopsy (but he hopes it doesn’t come to that).. While we wait for all the results to come back, he prescribed more pain medicine since this leg pain has worsened and been hard to bear. He also ordered a new TENS (transcutaneous electrical nerve stimulation) device for me to use when the pain wakes me up at night. Thankful for all he’s doing to help me be comfortable. ❤️ Continued below ⬇️ . . . . #suffering #painwithpurpose #mitochondrialdisease #handletteredtruth
3 days after we got home from Hawaii, I wrote in my last post that I started dealing with really bad muscle weakness, fatigue, and pain. This weakness is like nothing I’ve ever experienced, and it’s even worse than weakness that comes after sepsis—that’s how bad it is. :’( It’s challenging and fatiguing to do simple day-to-day activities (like filling a cup of water or holding a book..). I wasn’t even very active before, but I was still much more functional than this, so it’s been devastating to pretty much be recliner/bed-bound. 😭 If I knew that my strength would definitely return soon, this would be so much easier to bear. But I don’t know, so I feel like I’m in the middle of a desert with no water or end in sight. 🥺 I saw my PCP again today—he noted that I have diffuse weakness. 😔 I had 12 different labs drawn afterwards to check so many vitamin/mineral levels, antibodies, inflammatory markers, etc. He said if everything is normal, we might have to do a muscle biopsy (but he hopes it doesn’t come to that).. While we wait for all the results to come back, he prescribed more pain medicine since this leg pain has worsened and been hard to bear. He also ordered a new TENS (transcutaneous electrical nerve stimulation) device for me to use when the pain wakes me up at night. Thankful for all he’s doing to help me be comfortable. ❤️ Continued below ⬇️ . . . . #suffering #painwithpurpose #mitochondrialdisease #handletteredtruth
Hi, friends, I would so appreciate your prayers. Since getting back from my family’s trip to Hawaii, I haven’t been feeling well at all with really bad muscle weakness, fatigue, and pain. ? I’m so weak which makes it challenging to walk at my normal speed and do my day-to-day activities. The fatigue is so great (I go to bed at 7 pm and don’t get up the next day until around 10:30-11:00 am). The pain is out of this world, too, and it’s very difficult to concentrate/focus. ? I saw a couple of my doctors recently and had a bunch of labs drawn. At first, we weren’t sure if the weakness was from my platelets dropping the last 2 months (my latest platelet check looks much better than before, though). One specific lab came back really high which indicates there’s a lot of inflammation in my body. My PCP thinks it’s due to fighting a viral infection that I caught on vacation. I wish this had an easy fix, but he said we have to give it time to go back down.. And he’ll consider other treatment options if I don’t improve within the next several weeks.. It’s been incredibly rough feeling so crummy each and every day while waiting for my strength to return. My PICC line has also been itching a ton, and the MCAS medication for it hasn’t been helping like it used to. ? Could you please pray that all this inflammation and stress on my body doesn’t cause me to go into another bad mitochondrial crash? I really don’t want to have to be admitted to the hospital.. ? Thank you all for always being there for me through the ups and downs of life. ❤️ I am so blessed to have numerous prayer warriors like you!! . . . . #suffering #painwithpurpose #mitochondrialdisease
Hi, friends, I would so appreciate your prayers. Since getting back from my family’s trip to Hawaii, I haven’t been feeling well at all with really bad muscle weakness, fatigue, and pain. 🥺 I’m so weak which makes it challenging to walk at my normal speed and do my day-to-day activities. The fatigue is so great (I go to bed at 7 pm and don’t get up the next day until around 10:30-11:00 am). The pain is out of this world, too, and it’s very difficult to concentrate/focus. 😭 I saw a couple of my doctors recently and had a bunch of labs drawn. At first, we weren’t sure if the weakness was from my platelets dropping the last 2 months (my latest platelet check looks much better than before, though). One specific lab came back really high which indicates there’s a lot of inflammation in my body. My PCP thinks it’s due to fighting a viral infection that I caught on vacation. I wish this had an easy fix, but he said we have to give it time to go back down.. And he’ll consider other treatment options if I don’t improve within the next several weeks.. It’s been incredibly rough feeling so crummy each and every day while waiting for my strength to return. My PICC line has also been itching a ton, and the MCAS medication for it hasn’t been helping like it used to. 😔 Could you please pray that all this inflammation and stress on my body doesn’t cause me to go into another bad mitochondrial crash? I really don’t want to have to be admitted to the hospital.. 😢 Thank you all for always being there for me through the ups and downs of life. ❤️ I am so blessed to have numerous prayer warriors like you!! . . . . #suffering #painwithpurpose #mitochondrialdisease
Hi, friends! I just wanted to pop in and share that my fam and I did in fact make it to Hawaii, thanks to all of your prayers and God’s goodness. ? It’s been full of ups and downs physically, but I’m still so happy and thankful to be here. ? Oahu is simply stunning!! ??? . . . . . #oahu #hawaii #islandlife
Hi, friends! I just wanted to pop in and share that my fam and I did in fact make it to Hawaii, thanks to all of your prayers and God’s goodness. 🥲 It’s been full of ups and downs physically, but I’m still so happy and thankful to be here. 🥰 Oahu is simply stunning!! 🌴🌊😍 . . . . . #oahu #hawaii #islandlife
Lord willing, my family and I leave for our Hawaii trip next week to celebrate my parent’s 40th anniversary. This past week, though, has been full of ups and downs on whether it would happen or not.. I started experiencing daily nystagmus, droopy eyelids, horrible leg pain, elevated liver function labs, and other symptoms (all of which can indicate a possible brewing mitochondrial crash). ? It’s been so hard in the midst of this waiting period—being super excited for the trip but also having to brace myself in case of disappointment, you know? ? Yesterday, many elders and staff from my church came over to pray for me, and it was a very moving, emotional time. Even if the Lord doesn’t answer our prayers the way we would like, I know He hears every single cry. He counts every tear that falls. Today, my symptoms are less thankfully, but that’s the thing—life changes so quickly from day to day with mitochondrial disease, and it’s always challenging to “make plans.” No matter what happens, though, God’s grace is sufficient, and I know that this trip can happen if it’s part of His loving plan. Could you pray with me that I will fully trust the Lord and in His perfect timing? Really trying to surrender all and have open hands. I started a new medication today, and we’re praying it helps. Love you, friends. ❤️ | But as for me, my prayer is to you, O LORD. At an acceptable time, O God, in the abundance of your steadfast love answer me in your saving faithfulness. Psalm 69:13 | P.S. If we do make it to Hawaii, I will be sure to post some pics! ? . . . . . . #suffering #painwithpurpose #mitochondrialdisease #shepaintstruth #everymomentholy
Lord willing, my family and I leave for our Hawaii trip next week to celebrate my parent’s 40th anniversary. This past week, though, has been full of ups and downs on whether it would happen or not.. I started experiencing daily nystagmus, droopy eyelids, horrible leg pain, elevated liver function labs, and other symptoms (all of which can indicate a possible brewing mitochondrial crash). 🥺 It’s been so hard in the midst of this waiting period—being super excited for the trip but also having to brace myself in case of disappointment, you know? 😭 Yesterday, many elders and staff from my church came over to pray for me, and it was a very moving, emotional time. Even if the Lord doesn’t answer our prayers the way we would like, I know He hears every single cry. He counts every tear that falls. Today, my symptoms are less thankfully, but that’s the thing—life changes so quickly from day to day with mitochondrial disease, and it’s always challenging to “make plans.” No matter what happens, though, God’s grace is sufficient, and I know that this trip can happen if it’s part of His loving plan. Could you pray with me that I will fully trust the Lord and in His perfect timing? Really trying to surrender all and have open hands. I started a new medication today, and we’re praying it helps. Love you, friends. ❤️ | But as for me, my prayer is to you, O LORD. At an acceptable time, O God, in the abundance of your steadfast love answer me in your saving faithfulness. Psalm 69:13 | P.S. If we do make it to Hawaii, I will be sure to post some pics! 🥲 . . . . . . #suffering #painwithpurpose #mitochondrialdisease #shepaintstruth #everymomentholy
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. ? Continued below. ⬇️ #suffering #mitochondrialdisease #painwithpurpose
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. 😔 Continued below. ⬇️ #suffering #mitochondrialdisease #painwithpurpose
Dear friends, This was a hard post to write, and I’d really appreciate your prayers. I received my whole genome sequencing results, and I’m saddened to say that a molecular cause was not found. ? In other words, I have a confirmed Mitochondrial DNA Depletion Syndrome based on 2 muscle biopsies, but the doctors still cannot find the genetic mutation causing my mitochondrial depletion. It’s discouraging that my case is so rare. I saw my metabolic geneticist, and she came up with a plan. She recommends that I apply to the Undiagnosed Diseases Network through the NIH (I am “diagnosed” but also “undiagnosed” at the same time). There are multiple clinical sites throughout the US (the closest being Seattle). The UDN researches patients’ DNA to try and find new gene mutations, but they unfortunately don’t accept every single applicant.. She is also trying to get in touch with a biochemical geneticist at Children’s Hospital of Colorado who is running a research study called proteomics. I don’t totally understand it, but similar to genomics (the study of genes), proteomics involves the study of proteins in cells. If there are any abnormal proteins found in the mitochondria, then this information could help guide them to look closer at a specific gene. This geneticist in Colorado might only be accepting certain patients, though, so she hopes to get in touch with him for additional information.. Some more hard news is that I received my sleep study results. It was quite a shock to find out that I was diagnosed with Central Sleep-Disordered Breathing. Central sleep apnea is different from obstructive apnea in that the brain doesn’t send proper signals to the muscles that regulate breathing. During the study, I stopped breathing 91 times. ? I didn’t even hit the “deep sleep” stage, so it was noted that my numbers were likely underestimated. I had a long appointment with my sleep specialist yesterday, and we’re going to try a type of ventilator at night again, along with possible medication assistance to “glue” together my fragmented sleep. It will be a lot of trial and error.. Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease
Dear friends, This was a hard post to write, and I’d really appreciate your prayers. I received my whole genome sequencing results, and I’m saddened to say that a molecular cause was not found. 🥺 In other words, I have a confirmed Mitochondrial DNA Depletion Syndrome based on 2 muscle biopsies, but the doctors still cannot find the genetic mutation causing my mitochondrial depletion. It’s discouraging that my case is so rare. I saw my metabolic geneticist, and she came up with a plan. She recommends that I apply to the Undiagnosed Diseases Network through the NIH (I am “diagnosed” but also “undiagnosed” at the same time). There are multiple clinical sites throughout the US (the closest being Seattle). The UDN researches patients’ DNA to try and find new gene mutations, but they unfortunately don’t accept every single applicant.. She is also trying to get in touch with a biochemical geneticist at Children’s Hospital of Colorado who is running a research study called proteomics. I don’t totally understand it, but similar to genomics (the study of genes), proteomics involves the study of proteins in cells. If there are any abnormal proteins found in the mitochondria, then this information could help guide them to look closer at a specific gene. This geneticist in Colorado might only be accepting certain patients, though, so she hopes to get in touch with him for additional information.. Some more hard news is that I received my sleep study results. It was quite a shock to find out that I was diagnosed with Central Sleep-Disordered Breathing. Central sleep apnea is different from obstructive apnea in that the brain doesn’t send proper signals to the muscles that regulate breathing. During the study, I stopped breathing 91 times. 😢 I didn’t even hit the “deep sleep” stage, so it was noted that my numbers were likely underestimated. I had a long appointment with my sleep specialist yesterday, and we’re going to try a type of ventilator at night again, along with possible medication assistance to “glue” together my fragmented sleep. It will be a lot of trial and error.. Continued below. ⬇️ #suffering #painwithpurpose #mitochondrialdisease
Time for another sleep study.. I’ve lost count how many I’ve had, but it’s a lot. ? Hoping for the results to show that I no longer need to use a sleep device. ??
Time for another sleep study.. I’ve lost count how many I’ve had, but it’s a lot. 🫠 Hoping for the results to show that I no longer need to use a sleep device. 🤞🏻
Hi, friends, I read this recent quote by Joni Eareckson Tada, and I wanted to share it with you. I hope it’s an encouragement. ❤️ “Our needs can never, ever outpace the resources of Christ. The same Jesus who promises to be our strength is the same one who upholds all things, even the universe—he upholds it all by the power of his word.” I so resonate with all that she writes because she is such an example of someone who continues to trust Jesus through the hardest of times (quadriplegia, cancer twice, severe chronic pain, countless bouts of pneumonia, and more). For me, it’s challenging not to be overwhelmed by the future and what may happen down the road. There’s currently no cure for Mitochondrial DNA Depletion Syndrome, and the pain in my legs has been so rough lately. ? We’re not sure why, but they especially hurt in the mornings. I did have my lumbar sympathetic nerve block in the middle of June, but it sadly didn’t give significant or lasting pain relief which was a disappointment. Maybe through the years, Joni had the same thoughts like me about the unknown road ahead, and yet, she continues to be a real-life testimony of faith in Christ in the midst of difficult circumstances. She has now suffered with quadriplegia and all that comes with it for more than 55+ years, and each day, God has sustained her. This month marks 14 years (?!!) since my health trials really started, and I know the Lord will continue to supply me with all that I need for the long journey (whether physically or emotionally or spiritually). It’s good to remember that nothing is too much or too hard for him. Jeremiah 32:17 says, “Ah, Lord God! It is you who have made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you.” Just 10 verses later, God reminded Jeremiah, “Behold, I am the Lord, the God of all flesh. Is anything too hard for me?” ❤️ Continued below ⬇️
Hi, friends, I read this recent quote by Joni Eareckson Tada, and I wanted to share it with you. I hope it’s an encouragement. ❤️ “Our needs can never, ever outpace the resources of Christ. The same Jesus who promises to be our strength is the same one who upholds all things, even the universe—he upholds it all by the power of his word.” I so resonate with all that she writes because she is such an example of someone who continues to trust Jesus through the hardest of times (quadriplegia, cancer twice, severe chronic pain, countless bouts of pneumonia, and more). For me, it’s challenging not to be overwhelmed by the future and what may happen down the road. There’s currently no cure for Mitochondrial DNA Depletion Syndrome, and the pain in my legs has been so rough lately. 😢 We’re not sure why, but they especially hurt in the mornings. I did have my lumbar sympathetic nerve block in the middle of June, but it sadly didn’t give significant or lasting pain relief which was a disappointment. Maybe through the years, Joni had the same thoughts like me about the unknown road ahead, and yet, she continues to be a real-life testimony of faith in Christ in the midst of difficult circumstances. She has now suffered with quadriplegia and all that comes with it for more than 55+ years, and each day, God has sustained her. This month marks 14 years (😧!!) since my health trials really started, and I know the Lord will continue to supply me with all that I need for the long journey (whether physically or emotionally or spiritually). It’s good to remember that nothing is too much or too hard for him. Jeremiah 32:17 says, “Ah, Lord God! It is you who have made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you.” Just 10 verses later, God reminded Jeremiah, “Behold, I am the Lord, the God of all flesh. Is anything too hard for me?” ❤️ Continued below ⬇️
Hello, friends, It’s hard to believe it’s been almost 3 whole months since the day I came home from the hospital. I’m so grateful to God for each day here. It hasn’t been the easiest road since discharge (which I’ll tell you about below), but it truly has been a gift simply staying home. ? At some of the recent follow-up appointments with my doctors, we discussed how this is the 6th time I’ve experienced sepsis in less than 10 years. ? Yes, the body does recover from each episode of sepsis, but as my GI specialist explained, organs become more damaged in the long run as time goes on.. Each bout seems to get harder and harder to fight, and I dread the next time it happens. ? It’s hard not to think about all the “if only” scenarios. For example, if only I didn’t have renal magnesium wasting, then I wouldn’t need a port. Or, if only I didn’t have a port, then I wouldn’t experience blood infections/sepsis. Or, if only I didn’t need a port, then I could have a spinal cord stimulator implant again for the chronic pain and get off all the pain medications. But, if all those “ifs” came true, I don’t think I would lean on God as much! Psalm 119:71 says, “It is good for me that I was afflicted, that I might learn your statutes.” I love what Joni Eareckson Tada wrote in one of her books regarding difficult times, “Suffering has a way of heaving you beyond the shallows of life where your faith feels ankle-deep. It casts you out into the fathomless depths of God.” ❤️ I recently saw my nephrologist (kidney doctor). She ordered a bunch of tests to check up on the renal magnesium wasting. My body doesn’t hold onto magnesium well….that is, my kidneys excrete too much magnesium which is why I need chronic IV access to receive infusions of high dose magnesium. Anyways, the results of these recent tests show that it hasn’t improved at all. It also shows a decrease in kidney function which she says we’ll need to continue monitoring. Continued below. ⬇️
Hello, friends, It’s hard to believe it’s been almost 3 whole months since the day I came home from the hospital. I’m so grateful to God for each day here. It hasn’t been the easiest road since discharge (which I’ll tell you about below), but it truly has been a gift simply staying home. 🥲 At some of the recent follow-up appointments with my doctors, we discussed how this is the 6th time I’ve experienced sepsis in less than 10 years. 😢 Yes, the body does recover from each episode of sepsis, but as my GI specialist explained, organs become more damaged in the long run as time goes on.. Each bout seems to get harder and harder to fight, and I dread the next time it happens. 😔 It’s hard not to think about all the “if only” scenarios. For example, if only I didn’t have renal magnesium wasting, then I wouldn’t need a port. Or, if only I didn’t have a port, then I wouldn’t experience blood infections/sepsis. Or, if only I didn’t need a port, then I could have a spinal cord stimulator implant again for the chronic pain and get off all the pain medications. But, if all those “ifs” came true, I don’t think I would lean on God as much! Psalm 119:71 says, “It is good for me that I was afflicted, that I might learn your statutes.” I love what Joni Eareckson Tada wrote in one of her books regarding difficult times, “Suffering has a way of heaving you beyond the shallows of life where your faith feels ankle-deep. It casts you out into the fathomless depths of God.” ❤️ I recently saw my nephrologist (kidney doctor). She ordered a bunch of tests to check up on the renal magnesium wasting. My body doesn’t hold onto magnesium well….that is, my kidneys excrete too much magnesium which is why I need chronic IV access to receive infusions of high dose magnesium. Anyways, the results of these recent tests show that it hasn’t improved at all. It also shows a decrease in kidney function which she says we’ll need to continue monitoring. Continued below. ⬇️
| Part 4 | That evening on February 20th, I was transported by ambulance back to the 14C medicine floor. It was such a scary time. ? The sepsis caused my body to go into metabolic acidosis. So they quickly treated that with IV bicarbonate and started me on broad-spectrum IV antibiotics while we waited for my blood cultures to come back. I became leukopenic and anemic because my bone marrow got affected. ? This infection wreaked havoc on my kidneys so I continually had to be repleted with large amounts of IV electrolytes (especially potassium) each day. My blood cultures from my port ended up growing Staph Epidermidis. Knowing the cause of my symptoms was an answer to prayer, and the infectious disease doctors immediately started me on an IV antibiotic sensitive to that specific strain of bacteria. I was admitted for 5 weeks + 1 day (the total from not only this stay for sepsis but also when I was admitted for the mitochondrial crash). Being in the hospital for 2 difficult diagnoses that happened back to back was the hardest thing I’ve ever experienced. I thank God for how he graciously gave some happy times in the midst of it. I loved seeing the therapy dog and was over the moon when the medicine floor kindly let my family bring my brother’s dog to visit me. ? I also had some amazing nurses. There was a special night nurse assigned to me, and I’ll never forget him. Even when he was no longer part of my care team, he came to visit me each night he worked—isn’t that so sweet? ? But for the most part, inpatient life was scary and traumatic. And as I pondered these last few months, trying to make sense of it all, I was reminded of several things:
| Part 4 | That evening on February 20th, I was transported by ambulance back to the 14C medicine floor. It was such a scary time. 😢 The sepsis caused my body to go into metabolic acidosis. So they quickly treated that with IV bicarbonate and started me on broad-spectrum IV antibiotics while we waited for my blood cultures to come back. I became leukopenic and anemic because my bone marrow got affected. 🥺 This infection wreaked havoc on my kidneys so I continually had to be repleted with large amounts of IV electrolytes (especially potassium) each day. My blood cultures from my port ended up growing Staph Epidermidis. Knowing the cause of my symptoms was an answer to prayer, and the infectious disease doctors immediately started me on an IV antibiotic sensitive to that specific strain of bacteria. I was admitted for 5 weeks + 1 day (the total from not only this stay for sepsis but also when I was admitted for the mitochondrial crash). Being in the hospital for 2 difficult diagnoses that happened back to back was the hardest thing I’ve ever experienced. I thank God for how he graciously gave some happy times in the midst of it. I loved seeing the therapy dog and was over the moon when the medicine floor kindly let my family bring my brother’s dog to visit me. 😊 I also had some amazing nurses. There was a special night nurse assigned to me, and I’ll never forget him. Even when he was no longer part of my care team, he came to visit me each night he worked—isn’t that so sweet? 🥲 But for the most part, inpatient life was scary and traumatic. And as I pondered these last few months, trying to make sense of it all, I was reminded of several things:
| 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. ? Continued below. ??
| 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. 😔 Continued below. 👇🏻
| 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. Continued below. ⬇️
| 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. Continued below. ⬇️
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. If you already know the whole story, feel free to skip these next several posts. ? 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.. | Continued below ⬇️ |
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. If you already know the whole story, feel free to skip these next several posts. 😊 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.. | Continued below ⬇️ |
Hello friends! I just wanted to check in since I haven’t posted any art since January! Due to being in the hospital for many weeks, my right hand is weak and shaky right now to letter anything, but here is a piece I created a while back… I love this quote. ❤️ P.S. A short little update—I’m hanging in there and so thankful I’ve been home from the hospital for 3 weeks this coming Tuesday. ? My internal body clock has still been struggling to adjust to non-hospital life. So my sleep specialist started me on a new medication. I also have to get another sleep study done. ? I see my GI dr. this Tuesday and my kidney dr. in a couple of weeks! Thank you for your continued prayers. ❤️ I’m working on writing a blog post that will tell more of what happened these last 2 months, but it may be a little while before it’s finished.. ?‍? #suffering #painwithpurpose #mitochondrialdisease
Hello friends! I just wanted to check in since I haven’t posted any art since January! Due to being in the hospital for many weeks, my right hand is weak and shaky right now to letter anything, but here is a piece I created a while back… I love this quote. ❤️ P.S. A short little update—I’m hanging in there and so thankful I’ve been home from the hospital for 3 weeks this coming Tuesday. 🥲 My internal body clock has still been struggling to adjust to non-hospital life. So my sleep specialist started me on a new medication. I also have to get another sleep study done. 🙁 I see my GI dr. this Tuesday and my kidney dr. in a couple of weeks! Thank you for your continued prayers. ❤️ I’m working on writing a blog post that will tell more of what happened these last 2 months, but it may be a little while before it’s finished.. 😮‍💨 #suffering #painwithpurpose #mitochondrialdisease
Hi, friends, I had a whole other post ready to go with some good news, but instead, I have an urgent prayer request. I started experiencing sudden onset numbness, tingling, and weakness in my whole left leg, and it’s been so scary. ? It just came on out of the blue. I was doing so well with physical therapy each week (able to walk fast on the treadmill and leg press 40 lbs), and now, I have to limp because my left leg is soo weak. I really want to avoid the ED as much as possible, so I saw one of my doctors today. She’s concerned I’m having a big motor nerve issue. ? The plan is to see a physical medicine specialist, have a nerve conduction study, get an urgent MRI done, as well as see my PCP and pain doctor on the 25th and 29th for further evaluation/testing. I know I already said this, but it really has been so scary to lose function so quickly. Can you pray that I will trust the Lord and not worry? It’s been very hard, so I’d really appreciate your prayers and support in the coming weeks. Thank you so much. ❤️ #painwithpurpose #suffering #mitochondrialdisease
Hi, friends, I had a whole other post ready to go with some good news, but instead, I have an urgent prayer request. I started experiencing sudden onset numbness, tingling, and weakness in my whole left leg, and it’s been so scary. 🥺 It just came on out of the blue. I was doing so well with physical therapy each week (able to walk fast on the treadmill and leg press 40 lbs), and now, I have to limp because my left leg is soo weak. I really want to avoid the ED as much as possible, so I saw one of my doctors today. She’s concerned I’m having a big motor nerve issue. 😭 The plan is to see a physical medicine specialist, have a nerve conduction study, get an urgent MRI done, as well as see my PCP and pain doctor on the 25th and 29th for further evaluation/testing. I know I already said this, but it really has been so scary to lose function so quickly. Can you pray that I will trust the Lord and not worry? It’s been very hard, so I’d really appreciate your prayers and support in the coming weeks. Thank you so much. ❤️ #painwithpurpose #suffering #mitochondrialdisease
2024 has started off with a crazy busy month filled with about 21 different appointments (wound care, physical therapy, hand therapy, PICC dressing changes, follow-ups wjth my PCP, mast cell specialist, pain doctor, surgeon + much more). ?‍? But, I cancelled a few of those appointments due to the freezing rain! I hope to post an update on the latest within the next couple weeks.. Thank you for continuing to pray for me, friends. ❤️ . . . #suffering #painwithpurpose #mitochondrialdisease #chronicillness
2024 has started off with a crazy busy month filled with about 21 different appointments (wound care, physical therapy, hand therapy, PICC dressing changes, follow-ups wjth my PCP, mast cell specialist, pain doctor, surgeon + much more). 😵‍💫 But, I cancelled a few of those appointments due to the freezing rain! I hope to post an update on the latest within the next couple weeks.. Thank you for continuing to pray for me, friends. ❤️ . . . #suffering #painwithpurpose #mitochondrialdisease #chronicillness
Happy New Year, friends. ✨ Swipe left to read my annual “reflections” blog post—God was truly by my side through all of the hard in 2023. ❤️ . . . #suffering #painwithpurpose #mitochondrialdisease #2023recap
Happy New Year, friends. ✨ Swipe left to read my annual “reflections” blog post—God was truly by my side through all of the hard in 2023. ❤️ . . . #suffering #painwithpurpose #mitochondrialdisease #2023recap
| All of God’s Heaven is shouting His Praise, ‘Jesus has Come, the Ancient of Days!’ Born as a Babe to Save and Redeem; ‘Praise to the King’ is Forever our Theme. | -Joni Eareckson Tada ❤️ Have a very Merry Christmas, friends. Excited to celebrate with my family on Saturday! ?? . . . . #christmas2023 #christmaslettering #christmasart
| All of God’s Heaven is shouting His Praise, ‘Jesus has Come, the Ancient of Days!’ Born as a Babe to Save and Redeem; ‘Praise to the King’ is Forever our Theme. | -Joni Eareckson Tada ❤️ Have a very Merry Christmas, friends. Excited to celebrate with my family on Saturday! 🥰🎄 . . . . #christmas2023 #christmaslettering #christmasart
“Hark! The herald angels sing…” ??✨ I’m so thankful for the Christmas season. A reminder of why Jesus came to the earth—to save us from our sins and ultimately end pain and suffering. ❤️ I’ve been having a nystagmus flare-up and droopier eyelids (from the mitochondrial disease) these last couple of days, and we don’t know why. It usually comes back when I’m extra exhausted or if something is brewing.. ? I’m thankful that my fam and I aren’t celebrating Christmas until the 30th (due to my brothers’ shift work)…that way there are several days until then where I can hopefully feel more “normal.” ??? #painwithpurpose #suffering #mitochondrialdisease #christmaslettering
“Hark! The herald angels sing…” 🎶🎄✨ I’m so thankful for the Christmas season. A reminder of why Jesus came to the earth—to save us from our sins and ultimately end pain and suffering. ❤️ I’ve been having a nystagmus flare-up and droopier eyelids (from the mitochondrial disease) these last couple of days, and we don’t know why. It usually comes back when I’m extra exhausted or if something is brewing.. 😞 I’m thankful that my fam and I aren’t celebrating Christmas until the 30th (due to my brothers’ shift work)…that way there are several days until then where I can hopefully feel more “normal.” 🥲🤞🏻 #painwithpurpose #suffering #mitochondrialdisease #christmaslettering
Hi, friends, I wanted to share an update on the last few weeks. Thank you so much for continuing to pray for me—I’ve been really needing each and every prayer lately. ❤️ Sadly, my legs have still been aching terribly all day every day, and it gets so overwhelming to bear this deep aching pain on top of my regular small fiber neuropathy. ? It’s very difficult to focus because the pain is unrelenting, and my pain meds only bring it down maybe 1-2 points. There have been a lot of tears in private, even writing this. :’( We are still trying to figure out what’s causing the leg pain—I have a few big appointments with specialists this month and next. Sleep is rough and restless with the pain, and on top of that, my PICC line continues to itch terribly every day and night from the mast cell disorder (MCAS). I have to often get ice in the middle of the night more than once because that’s the only thing that helps the itching to calm down. It’s just hard to have a sterile adhesive dressing over my PICC line and not be able to scratch underneath it (since it has to stay extremely sterile). ? I have a second opinion with a specialist this week for the MCAS. Last week, I had a one year follow-up with my neuro-ophthalmologist to check up on the chronic progressive external ophthalmoplegia (CPEO) caused by my mitochondrial DNA depletion. It’s always a little disheartening when my doctor examines my eyes because it reminds me that I can’t look different directions like healthy people. This eye muscle paralysis makes it a challenge to see certain things (normally, one would just move their eyeballs a specific direction, but I can’t). I thank God that I still have my eyesight and that most people can’t tell I have CPEO. There’s a mitochondrial disorder called Leber’s Hereditary Optic Neuropathy that causes blindness, and I’m so thankful I don’t have that. I hope sharing all this is bringing awareness to how bad mitochondrial diseases are. ? *continued in comments ⤵️⤵️* #painwithpurpose #suffering #mitochondrialdisease #christmaslettering
Hi, friends, I wanted to share an update on the last few weeks. Thank you so much for continuing to pray for me—I’ve been really needing each and every prayer lately. ❤️ Sadly, my legs have still been aching terribly all day every day, and it gets so overwhelming to bear this deep aching pain on top of my regular small fiber neuropathy. 🥺 It’s very difficult to focus because the pain is unrelenting, and my pain meds only bring it down maybe 1-2 points. There have been a lot of tears in private, even writing this. :’( We are still trying to figure out what’s causing the leg pain—I have a few big appointments with specialists this month and next. Sleep is rough and restless with the pain, and on top of that, my PICC line continues to itch terribly every day and night from the mast cell disorder (MCAS). I have to often get ice in the middle of the night more than once because that’s the only thing that helps the itching to calm down. It’s just hard to have a sterile adhesive dressing over my PICC line and not be able to scratch underneath it (since it has to stay extremely sterile). 😭 I have a second opinion with a specialist this week for the MCAS. Last week, I had a one year follow-up with my neuro-ophthalmologist to check up on the chronic progressive external ophthalmoplegia (CPEO) caused by my mitochondrial DNA depletion. It’s always a little disheartening when my doctor examines my eyes because it reminds me that I can’t look different directions like healthy people. This eye muscle paralysis makes it a challenge to see certain things (normally, one would just move their eyeballs a specific direction, but I can’t). I thank God that I still have my eyesight and that most people can’t tell I have CPEO. There’s a mitochondrial disorder called Leber’s Hereditary Optic Neuropathy that causes blindness, and I’m so thankful I don’t have that. I hope sharing all this is bringing awareness to how bad mitochondrial diseases are. 😢 *continued in comments ⤵️⤵️* #painwithpurpose #suffering #mitochondrialdisease #christmaslettering
“…Born to set Thy people free; From our fears and sins release us, Let us find our rest in Thee.” ?? . . . . #christmasartwork #christmaslettering
“…Born to set Thy people free; From our fears and sins release us, Let us find our rest in Thee.” 🎄🎶 . . . . #christmasartwork #christmaslettering
I hope you had a wonderful Thanksgiving, friends. ?? So much has happened this year, and saying it’s been “hard” is an understatement. But God, in his mercy and compassion, has continually granted me the endurance to keep walking this path of suffering. I give thanks and praise to his name, for I could not do this life without him. ❤️ I also want to thank you all! Your caring prayers all these years have been such a blessing—I am always so encouraged by your love and kindness to me! ? #thanksgiving2023 #suffering #painwithpurpose #psalm69
I hope you had a wonderful Thanksgiving, friends. 🤗🧡 So much has happened this year, and saying it’s been “hard” is an understatement. But God, in his mercy and compassion, has continually granted me the endurance to keep walking this path of suffering. I give thanks and praise to his name, for I could not do this life without him. ❤️ I also want to thank you all! Your caring prayers all these years have been such a blessing—I am always so encouraged by your love and kindness to me! 🥰 #thanksgiving2023 #suffering #painwithpurpose #psalm69
Hi, friends, I just wanted to share how the appointment with my GI specialist went this past Monday. Thank you so much for praying about it. ❤️ After giving him an update on all that has happened, I’m happy to say that he is being very proactive about the high liver enzymes that are showing up on my blood tests the last 8+ weeks. I get 5 blood tests drawn every single week when my home health nurse comes to change my PICC line dressing. Well, my GI dr. ordered 10 additional blood tests on top of the original 5!! He also placed an order for an elastography scan which is a specialized ultrasound that grades how stiff the liver is—when there’s scar tissue, the liver gets stiff. The more scar tissue there is, the stiffer it becomes. Unfortunately, they’re booked out, so it can’t be done until next month.. I asked him if my high liver enzymes could be from not being able to take my Wilson’s Disease medication (the one that helps chelate copper out of my liver which has been back ordered for many months). In his opinion, he doesn’t think so because symptoms from Wilson’s slowly develop over time and not this fast. But, he did say my case is so complex and that I’m “one in a million.” ? These high liver enzymes could be from the Mitochondrial DNA Depletion Syndrome….it could be a reaction to a medication or from the antibiotics I took for the abdominal abscess…it could be from my mast cell disorder…or he could be wrong and it IS from Wilson’s…! He just doesn’t know yet, and since things are always so complicated with me, all these tests he ordered may or may not give an answer.. ? (continued in comments ⤵️⤵️) #painwithpurpose #suffering #mitochondrialdisease
Hi, friends, I just wanted to share how the appointment with my GI specialist went this past Monday. Thank you so much for praying about it. ❤️ After giving him an update on all that has happened, I’m happy to say that he is being very proactive about the high liver enzymes that are showing up on my blood tests the last 8+ weeks. I get 5 blood tests drawn every single week when my home health nurse comes to change my PICC line dressing. Well, my GI dr. ordered 10 additional blood tests on top of the original 5!! He also placed an order for an elastography scan which is a specialized ultrasound that grades how stiff the liver is—when there’s scar tissue, the liver gets stiff. The more scar tissue there is, the stiffer it becomes. Unfortunately, they’re booked out, so it can’t be done until next month.. I asked him if my high liver enzymes could be from not being able to take my Wilson’s Disease medication (the one that helps chelate copper out of my liver which has been back ordered for many months). In his opinion, he doesn’t think so because symptoms from Wilson’s slowly develop over time and not this fast. But, he did say my case is so complex and that I’m “one in a million.” 😞 These high liver enzymes could be from the Mitochondrial DNA Depletion Syndrome….it could be a reaction to a medication or from the antibiotics I took for the abdominal abscess…it could be from my mast cell disorder…or he could be wrong and it IS from Wilson’s…! He just doesn’t know yet, and since things are always so complicated with me, all these tests he ordered may or may not give an answer.. 😢 (continued in comments ⤵️⤵️) #painwithpurpose #suffering #mitochondrialdisease
Dear friends, Several weeks have passed since I last posted—mainly because so much has been happening in the world, our country…and here at home. ? It has weighed heavily on my heart. I’m so thankful that God is sovereign and that we can trust Him through these difficult times. ❤️ Ever since I had that abdominal abscess near my j-tube in August, I’ve been experiencing sharp, stabbing pain and inflammation in that area because the skin is raw and not happy. I had another follow-up with dermatology last week, and they referred me to the wound care clinic. Hopefully I can get an appointment soon and that they’re not booked out.. For the last 8+ weeks now, my liver enzymes have been elevated, and we’re wondering if that’s why I haven’t been feeling the greatest. My legs have been aching and burning terribly (it doesn’t feel like my usual small fiber neuropathy symptoms, though). In addition to my Mitochondrial DNA Depletion Syndrome, I have Wilson’s Disease (a disorder that causes my liver to accumulate too much copper). This is usually well-managed by a medication I’m prescribed. A specialized form of zinc, it helps chelate (“get rid of”) copper out of my liver. BUT, it has sadly been back-ordered the last 3+ months. ? So we’re not sure if the high liver results are from not being able to take the medication….or if something new is happening. I have an appointment with my GI specialist on November 6th, and we’re praying he can figure out what’s going on. (continued in comments ⬇️⬇️) #painwithpurpose #psalmart
Dear friends, Several weeks have passed since I last posted—mainly because so much has been happening in the world, our country…and here at home. 😔 It has weighed heavily on my heart. I’m so thankful that God is sovereign and that we can trust Him through these difficult times. ❤️ Ever since I had that abdominal abscess near my j-tube in August, I’ve been experiencing sharp, stabbing pain and inflammation in that area because the skin is raw and not happy. I had another follow-up with dermatology last week, and they referred me to the wound care clinic. Hopefully I can get an appointment soon and that they’re not booked out.. For the last 8+ weeks now, my liver enzymes have been elevated, and we’re wondering if that’s why I haven’t been feeling the greatest. My legs have been aching and burning terribly (it doesn’t feel like my usual small fiber neuropathy symptoms, though). In addition to my Mitochondrial DNA Depletion Syndrome, I have Wilson’s Disease (a disorder that causes my liver to accumulate too much copper). This is usually well-managed by a medication I’m prescribed. A specialized form of zinc, it helps chelate (“get rid of”) copper out of my liver. BUT, it has sadly been back-ordered the last 3+ months. 😭 So we’re not sure if the high liver results are from not being able to take the medication….or if something new is happening. I have an appointment with my GI specialist on November 6th, and we’re praying he can figure out what’s going on. (continued in comments ⬇️⬇️) #painwithpurpose #psalmart
What a comfort this verse is. ? So much has been happening (in the world, our country, here at home), and it gets overwhelming….but God HEARS our cries for help. He is not absent in the midst of our suffering. ❤️ #painwithpurpose #psalm18
What a comfort this verse is. 🥺 So much has been happening (in the world, our country, here at home), and it gets overwhelming….but God HEARS our cries for help. He is not absent in the midst of our suffering. ❤️ #painwithpurpose #psalm18
Hi, friends, It’s been a few weeks since I last checked in—I just wanted to post an update this evening because I’m so grateful for your continued prayers. ❤️ I did end up seeing the dermatologist at OHSU. That one incision has thankfully closed up, but it is leaving a big scar. ? Speaking of scars, I have a section of deep scar tissue from the loop drain the surgeons had to tunnel underneath the skin…it is very tender, so I’ve been trying to massage/rub it a lot to break up the hard rope-like scarring in my abdomen. Right next to my j-tube, there is a section of skin that the dermatologists are a little concerned about. It’s hard to explain, but it doesn’t look like healthy tissue. ? They prescribed a topical immunosuppressive medication and want to keep monitoring it so that it doesn’t turn into a serious skin condition that they wrote about in their chart notes. It can happen after an injury or trauma (like the abscess and bedside surgery I had). They didn’t tell me about this condition in person—I’m wondering if it’s because they don’t want to scare me? ? Could you please pray that this area near my j-tube will heal and not worsen? Another issue going on is that I’ve been reacting terribly to my PICC line dressing site. My skin has a painful rash not just from the adhesive dressing but also from the cotton gauze and the PICC line itself (it’s never been this bad before). ? Random rashes/hives also pop up on my skin elsewhere. My port hasn’t been re-accessed yet—I’m scared the same thing will happen like before where the port site will develop a rash/welts and I’ll need a PICC again. ? I have an appointment with my immunology specialist this coming Wednesday to talk about other treatments for my mast cell activation disorder (which is what’s causing me to have an allergic reaction to so many different things).. (continued in comments ⬇️⬇️)
Hi, friends, It’s been a few weeks since I last checked in—I just wanted to post an update this evening because I’m so grateful for your continued prayers. ❤️ I did end up seeing the dermatologist at OHSU. That one incision has thankfully closed up, but it is leaving a big scar. 😕 Speaking of scars, I have a section of deep scar tissue from the loop drain the surgeons had to tunnel underneath the skin…it is very tender, so I’ve been trying to massage/rub it a lot to break up the hard rope-like scarring in my abdomen. Right next to my j-tube, there is a section of skin that the dermatologists are a little concerned about. It’s hard to explain, but it doesn’t look like healthy tissue. 😣 They prescribed a topical immunosuppressive medication and want to keep monitoring it so that it doesn’t turn into a serious skin condition that they wrote about in their chart notes. It can happen after an injury or trauma (like the abscess and bedside surgery I had). They didn’t tell me about this condition in person—I’m wondering if it’s because they don’t want to scare me? 😟 Could you please pray that this area near my j-tube will heal and not worsen? Another issue going on is that I’ve been reacting terribly to my PICC line dressing site. My skin has a painful rash not just from the adhesive dressing but also from the cotton gauze and the PICC line itself (it’s never been this bad before). 😔 Random rashes/hives also pop up on my skin elsewhere. My port hasn’t been re-accessed yet—I’m scared the same thing will happen like before where the port site will develop a rash/welts and I’ll need a PICC again. 🥺 I have an appointment with my immunology specialist this coming Wednesday to talk about other treatments for my mast cell activation disorder (which is what’s causing me to have an allergic reaction to so many different things).. (continued in comments ⬇️⬇️)
*Reposting—the IG algorithm is so bad that my insights highlighted my post wasn’t shown to any of my followers ?* I had to see my surgeon yet again yesterday because the second incision that I’ve been “packing” with gauze hasn’t been healing unfortunately, and it is now shaped like a hole. ? I can see the layers of skin inside. ? She advised that I stop packing the incision now to see if that will help—but just a couple weeks before, I was instructed by her team that packing helps an incision to heal from the bottom to the top…in other words, if one stopped packing, the skin could close at the top and leave a hole underneath.. ? She said she doesn’t know why it’s not healing quickly like my other incision did, so I kinda feel like they’re not sure what to do.. If the hole is still not healing by the 22nd, I have a second opinion that day to see OHSU dermatology. It’s been about 4 weeks now since the abdominal abscess started, so I’m sad that this whole ordeal hasn’t resolved still. ? Would really appreciate your continued prayers. My pastor shared the above verse with me recently, and it was so encouraging—I just had to hand letter it! What a beautiful reminder from Psalms that God does not hold back His compassion—He gives it to us and continually sustains us each day. ❤️ #painwithpurpose #suffering #mitochondrialdisease #scriptureart
*Reposting—the IG algorithm is so bad that my insights highlighted my post wasn’t shown to any of my followers 🫠* I had to see my surgeon yet again yesterday because the second incision that I’ve been “packing” with gauze hasn’t been healing unfortunately, and it is now shaped like a hole. 😭 I can see the layers of skin inside. 😥 She advised that I stop packing the incision now to see if that will help—but just a couple weeks before, I was instructed by her team that packing helps an incision to heal from the bottom to the top…in other words, if one stopped packing, the skin could close at the top and leave a hole underneath.. 😞 She said she doesn’t know why it’s not healing quickly like my other incision did, so I kinda feel like they’re not sure what to do.. If the hole is still not healing by the 22nd, I have a second opinion that day to see OHSU dermatology. It’s been about 4 weeks now since the abdominal abscess started, so I’m sad that this whole ordeal hasn’t resolved still. 🥺 Would really appreciate your continued prayers. My pastor shared the above verse with me recently, and it was so encouraging—I just had to hand letter it! What a beautiful reminder from Psalms that God does not hold back His compassion—He gives it to us and continually sustains us each day. ❤️ #painwithpurpose #suffering #mitochondrialdisease #scriptureart
Dear friends, I just wanted to update you all since it’s been almost a week.. I saw my surgeon’s team once again yesterday—she said I’m her longest and most favorite patient. ? Hard to believe I started seeing her back in 2014. Thank you all for your prayers regarding this abscess. Praise God, my abdomen is looking much better. I still have to pack one incision (it’s still draining) but not the other which I’m so happy about! I’ll be finished with my antibiotics by this weekend. For those who like knowing medical stuff, my culture results came back—it showed the abscess was caused by E. Coli. ? We’re not sure what’s going on now, but a few days ago, I started experiencing bad nystagmus (a neurological symptom that causes shaking eyeballs). ? Whenever this happens, it usually hints to something going on inside my body.. For example, I get nystagmus especially when I have sepsis or if I go into a “mitochondrial crash.” I’ve been exhausted from all that has happened lately, so I’d really appreciate your prayers that the nystagmus is simply because I’m fatigued and not from something more serious.. I’m so blessed by your love and caring support all these years! Having you all as “prayer warriors” truly helps me bear this ongoing burden. Thank you from the bottom of my heart. ? #painwithpurpose #suffering #kk_polaroidart #timkeller
Dear friends, I just wanted to update you all since it’s been almost a week.. I saw my surgeon’s team once again yesterday—she said I’m her longest and most favorite patient. 😄 Hard to believe I started seeing her back in 2014. Thank you all for your prayers regarding this abscess. Praise God, my abdomen is looking much better. I still have to pack one incision (it’s still draining) but not the other which I’m so happy about! I’ll be finished with my antibiotics by this weekend. For those who like knowing medical stuff, my culture results came back—it showed the abscess was caused by E. Coli. 🤢 We’re not sure what’s going on now, but a few days ago, I started experiencing bad nystagmus (a neurological symptom that causes shaking eyeballs). 😥 Whenever this happens, it usually hints to something going on inside my body.. For example, I get nystagmus especially when I have sepsis or if I go into a “mitochondrial crash.” I’ve been exhausted from all that has happened lately, so I’d really appreciate your prayers that the nystagmus is simply because I’m fatigued and not from something more serious.. I’m so blessed by your love and caring support all these years! Having you all as “prayer warriors” truly helps me bear this ongoing burden. Thank you from the bottom of my heart. 🥰 #painwithpurpose #suffering #kk_polaroidart #timkeller
It’s been a really rough day (the whole past week actually). The abdominal abscess has not improved, despite having the drain in place and being on antibiotics. ? I’ve been in such horrendous pain all day and night—I’ve never experienced pain this bad in my life. When I had a stone stuck in the neck of my gallbladder back in 2021, that was rough but it didn’t even come close to this pain. ? Because I’ve been getting worse, my surgeon’s team saw me this afternoon, and they once again had to try and flush the pus out. ? Instead of a drain, we’re now going to see if “packing” the incisions will help. If things don’t improve by the weekend, they’ll order a CT scan. Could you please pray that my body can fight this infection and for the pain to lessen? I’m just not sleeping until after 7 AM every day because my heart rate’s been so high and I can’t get comfortable. ? I lettered this quote many many months ago, not knowing it would be so relevant this week. I’ve definitely been afraid and physically/emotionally exhausted, but I’m so thankful I’m not alone in my fear. God sees my pain and walks beside me during this unimaginable situation. ? #painwithpurpose #suffering #elisabethelliot
It’s been a really rough day (the whole past week actually). The abdominal abscess has not improved, despite having the drain in place and being on antibiotics. 😭 I’ve been in such horrendous pain all day and night—I’ve never experienced pain this bad in my life. When I had a stone stuck in the neck of my gallbladder back in 2021, that was rough but it didn’t even come close to this pain. 😔 Because I’ve been getting worse, my surgeon’s team saw me this afternoon, and they once again had to try and flush the pus out. 🥺 Instead of a drain, we’re now going to see if “packing” the incisions will help. If things don’t improve by the weekend, they’ll order a CT scan. Could you please pray that my body can fight this infection and for the pain to lessen? I’m just not sleeping until after 7 AM every day because my heart rate’s been so high and I can’t get comfortable. 😢 I lettered this quote many many months ago, not knowing it would be so relevant this week. I’ve definitely been afraid and physically/emotionally exhausted, but I’m so thankful I’m not alone in my fear. God sees my pain and walks beside me during this unimaginable situation. 💜 #painwithpurpose #suffering #elisabethelliot
Yesterday morning was extremely hard and unexpected. I just can’t catch a break. ? I was supposed to be getting a simple PICC line placed, but instead, I had to go to the OHSU ED at 3:00 AM for debilitating abdominal pain. I was crying my eyes out from the 10 out of 10 pain, and I couldn’t get comfortable even with my home pain meds. Once there, I had an abdominal ultrasound done, and the doctors found a pretty big abscess at my j-tube site. ? My surgeon’s team had to come by and do bedside surgery to open it up and drain all the nasty fluid out—there was quite a bit of pus.. ? They decided to place a “loop drain,” so I have two incisions. ? One of the doctors told me he’s so glad I decided to come in because it could have gotten worse quickly. While there, the vascular access team was able to place my PICC line since my appointment at Providence Portland had to be canceled. This is my 3rd PICC line, my 3rd ED visit, my 3rd surgery—all in just 6 months. ?? I just can’t wait for Heaven where there will be no more pain, tears, and suffering. ❤️ | 2 Corinthians 12:9-10 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. | #kk_polaroidart #painwithpurpose #suffering #mitochondrialdisease
Yesterday morning was extremely hard and unexpected. I just can’t catch a break. 😭 I was supposed to be getting a simple PICC line placed, but instead, I had to go to the OHSU ED at 3:00 AM for debilitating abdominal pain. I was crying my eyes out from the 10 out of 10 pain, and I couldn’t get comfortable even with my home pain meds. Once there, I had an abdominal ultrasound done, and the doctors found a pretty big abscess at my j-tube site. 😔 My surgeon’s team had to come by and do bedside surgery to open it up and drain all the nasty fluid out—there was quite a bit of pus.. 😭 They decided to place a “loop drain,” so I have two incisions. 😞 One of the doctors told me he’s so glad I decided to come in because it could have gotten worse quickly. While there, the vascular access team was able to place my PICC line since my appointment at Providence Portland had to be canceled. This is my 3rd PICC line, my 3rd ED visit, my 3rd surgery—all in just 6 months. 😢😢 I just can’t wait for Heaven where there will be no more pain, tears, and suffering. ❤️ | 2 Corinthians 12:9-10 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. | #kk_polaroidart #painwithpurpose #suffering #mitochondrialdisease
Dear friends, I would really appreciate your prayers yet again with this latest turn of events. To recap, in February, I had sepsis from a central line infection. A PICC line was placed because my Hickman central line had to be surgically removed due to the infection. I had that PICC until April 4th, the day of my port surgery. About a week later, my port incision severely reacted to the dermabond (surgical glue), so the doctors advised I use strong antibiotic/steroid ointment over the site, stop using my port, and get PICC line number 2. About a month later, my port site was healed well enough to get my PICC line pulled and my port re-accessed. Things were going great port-wise for about 2 months (I bet you can guess where this is going.. ?). But then, several weeks ago, my site developed a small welt/rash, so I was de-accessing a day early each week to put a bunch of Benadryl gel, cream, and Active Skin Repair on it. Last week, the home health nurse couldn’t access my port and get it to flush/draw blood (this has never happened before). It took 4 pokes to get the Huber needle in the right place. We’re not sure if it’s because of that (plus the hot weather temps and/or a mast cell activation flare-up), but my skin has gotten much worse and not better as time goes on. I’m not sleeping well because it itches SO much, and I’m scratching all day, every day, wanting to rip out my port needle. ? De-accessing one day a week to put a bunch of cream on has not been enough time to let my skin heal, so my GI specialist has decided it’s best to get PICC line number 3 temporarily placed. And I’m so bummed and sad about that, especially because my arms don’t tolerate PICC lines well—I have scarring all over my upper arms from reacting to the PICC tape. ? Could you please pray that my port site will heal completely and that my arm won’t itch terribly? My GI dr. marked this as “urgent” so it’s scheduled for this Sunday at 8:15 in the morning. *This update is long, so you can read the rest of it at the link in my bio, if you’d like.* Love you all. ? #painwithpurpose #mitochondrialdisease #piccline #lysaterkeurst
Dear friends, I would really appreciate your prayers yet again with this latest turn of events. To recap, in February, I had sepsis from a central line infection. A PICC line was placed because my Hickman central line had to be surgically removed due to the infection. I had that PICC until April 4th, the day of my port surgery. About a week later, my port incision severely reacted to the dermabond (surgical glue), so the doctors advised I use strong antibiotic/steroid ointment over the site, stop using my port, and get PICC line number 2. About a month later, my port site was healed well enough to get my PICC line pulled and my port re-accessed. Things were going great port-wise for about 2 months (I bet you can guess where this is going.. 😫). But then, several weeks ago, my site developed a small welt/rash, so I was de-accessing a day early each week to put a bunch of Benadryl gel, cream, and Active Skin Repair on it. Last week, the home health nurse couldn’t access my port and get it to flush/draw blood (this has never happened before). It took 4 pokes to get the Huber needle in the right place. We’re not sure if it’s because of that (plus the hot weather temps and/or a mast cell activation flare-up), but my skin has gotten much worse and not better as time goes on. I’m not sleeping well because it itches SO much, and I’m scratching all day, every day, wanting to rip out my port needle. 😭 De-accessing one day a week to put a bunch of cream on has not been enough time to let my skin heal, so my GI specialist has decided it’s best to get PICC line number 3 temporarily placed. And I’m so bummed and sad about that, especially because my arms don’t tolerate PICC lines well—I have scarring all over my upper arms from reacting to the PICC tape. 😔 Could you please pray that my port site will heal completely and that my arm won’t itch terribly? My GI dr. marked this as “urgent” so it’s scheduled for this Sunday at 8:15 in the morning. *This update is long, so you can read the rest of it at the link in my bio, if you’d like.* Love you all. 🩵 #painwithpurpose #mitochondrialdisease #piccline #lysaterkeurst
Exactly 5 years ago today, my body went into septic shock about 12 hours after I had surgery to repair a torn hip labrum. That was a very scary time as my kidneys started shutting down, my liver got hit with ischemic hepatitis (my liver labs were in the 1000s, and normal is below 50), my lungs partially collapsed, and much more. But despite all that, God gave my ICU doctors wisdom to treat my extremely low blood pressure quickly. Once my body was given norepinephrine, things miraculously turned around, and I was only in the hospital for 6 days. ?❤️ I learned from that hard time to never forget what happens in the past and how God faithfully works all things for good, even when we feel weak and helpless. ? This beautiful quote I hand lettered summarizes my thoughts perfectly! ✨ #painwithpurpose #suffering #mitochondrialdisease #septicshock
Exactly 5 years ago today, my body went into septic shock about 12 hours after I had surgery to repair a torn hip labrum. That was a very scary time as my kidneys started shutting down, my liver got hit with ischemic hepatitis (my liver labs were in the 1000s, and normal is below 50), my lungs partially collapsed, and much more. But despite all that, God gave my ICU doctors wisdom to treat my extremely low blood pressure quickly. Once my body was given norepinephrine, things miraculously turned around, and I was only in the hospital for 6 days. 😭❤️ I learned from that hard time to never forget what happens in the past and how God faithfully works all things for good, even when we feel weak and helpless. 🥲 This beautiful quote I hand lettered summarizes my thoughts perfectly! ✨ #painwithpurpose #suffering #mitochondrialdisease #septicshock
Hey friends, I just posted an update on my blog about how my j-tube procedure went last month (link in bio)…I’m sorry it took so long to write it! Thank you all for your love and support. P.S. This verse. ❤️❤️ #painwithpurpose #suffering #mitochondrialdisease #feedingtube
Hey friends, I just posted an update on my blog about how my j-tube procedure went last month (link in bio)…I’m sorry it took so long to write it! Thank you all for your love and support. P.S. This verse. ❤️❤️ #painwithpurpose #suffering #mitochondrialdisease #feedingtube
I’ve been dealing with yet another terrible status migrainosus episode, and they’re always so draining physically and mentally. ? If any of you are going through something difficult, too, I just wanted to share this beautiful verse I lettered a while back. Even in hard times, God is with us! ❤️ #painwithpurpose #suffering #mitochondrialdisease #handletteredtruth
I’ve been dealing with yet another terrible status migrainosus episode, and they’re always so draining physically and mentally. 😔 If any of you are going through something difficult, too, I just wanted to share this beautiful verse I lettered a while back. Even in hard times, God is with us! ❤️ #painwithpurpose #suffering #mitochondrialdisease #handletteredtruth
When I had my port surgery in April, I mentioned that my surgeon was also going to replace my j-tube to a new one while I was under anesthesia.  Sadly, this “new” tube has been causing a lot of abdominal pain, and the pain has gotten especially bad these last several days.  The tube is most likely stuck in the abdominal wall (I had this same issue called “buried bumper syndrome” back in 2014).  I didn’t post about this recent problem in my previous blog update because I was hoping it would resolve soon, but it hasn’t. ? It really hurts to walk, cough, laugh, sleep, etc.  So my surgeon is squeezing me in for an urgent appointment on July 5th.  Unfortunately, they have to order the tube I need, and it can take up to 5 weeks to be delivered.  My surgeon’s team has been looking around to see if other clinics may possibly carry my tube size, but they haven’t found one, so the plan is to place a temporary tube.  Tube replacements are incredibly painful (especially when my intestine is raw from the “buried bumper syndrome”).  And since it will be done in clinic, I’ll have to be completely awake (which is why I try to coordinate these when I’m already under anesthesia).  While I can’t wait for this bad tube to be removed, I’m also dreading it at the same time……I would really appreciate your prayers that I’ll be strong in the Lord and that the pain from the procedure won’t be unbearable. ? When the correct tube comes in later, I hate that I’ll have to go through another tube change while awake.  I know the Lord will be with me for these upcoming tube replacements, and I also remember His grace is sufficient.  But I wish this debacle didn’t happen. ? Sometimes during painful procedures, tears automatically leak out of my eyes.  And it makes me think of this beautiful verse from Psalm 9 that I hand lettered a while back.  Thank you, Lord, for not forgetting the cry of the afflicted. ❤️ #painwithpurpose #suffering #psalms #mitochondrialdisease
When I had my port surgery in April, I mentioned that my surgeon was also going to replace my j-tube to a new one while I was under anesthesia.  Sadly, this “new” tube has been causing a lot of abdominal pain, and the pain has gotten especially bad these last several days.  The tube is most likely stuck in the abdominal wall (I had this same issue called “buried bumper syndrome” back in 2014).  I didn’t post about this recent problem in my previous blog update because I was hoping it would resolve soon, but it hasn’t. 😢 It really hurts to walk, cough, laugh, sleep, etc.  So my surgeon is squeezing me in for an urgent appointment on July 5th.  Unfortunately, they have to order the tube I need, and it can take up to 5 weeks to be delivered.  My surgeon’s team has been looking around to see if other clinics may possibly carry my tube size, but they haven’t found one, so the plan is to place a temporary tube.  Tube replacements are incredibly painful (especially when my intestine is raw from the “buried bumper syndrome”).  And since it will be done in clinic, I’ll have to be completely awake (which is why I try to coordinate these when I’m already under anesthesia).  While I can’t wait for this bad tube to be removed, I’m also dreading it at the same time……I would really appreciate your prayers that I’ll be strong in the Lord and that the pain from the procedure won’t be unbearable. 🙁 When the correct tube comes in later, I hate that I’ll have to go through another tube change while awake.  I know the Lord will be with me for these upcoming tube replacements, and I also remember His grace is sufficient.  But I wish this debacle didn’t happen. 😭 Sometimes during painful procedures, tears automatically leak out of my eyes.  And it makes me think of this beautiful verse from Psalm 9 that I hand lettered a while back.  Thank you, Lord, for not forgetting the cry of the afflicted. ❤️ #painwithpurpose #suffering #psalms #mitochondrialdisease
One of my favorite verses from Romans. ❤️ #painwithpurpose #suffering #scriptureart
One of my favorite verses from Romans. ❤️ #painwithpurpose #suffering #scriptureart
Wow ? #suffering #painwithpurpose #joniearecksontada #shepaintstruth
Wow 🔥 #suffering #painwithpurpose #joniearecksontada #shepaintstruth
Haven’t posted some of my art in a while, so here is a verse from Psalms that I lettered recently. ? May it be an encouragement to you!! ? #painwithpurpose #bibleart #shepaintstruth #watercolorlettering
Haven’t posted some of my art in a while, so here is a verse from Psalms that I lettered recently. 😊 May it be an encouragement to you!! 💙 #painwithpurpose #bibleart #shepaintstruth #watercolorlettering
The last several photos of the wedding signage I hand lettered along with a special picture at the end ?✨ Courtney is a true blessing to all of us, and we’re so happy she joined our family. I just love getting to call her my sister-in-law and friend. ?? PC: @kaylasprint ? #weddingsignage #weddingcalligraphy #pnwwedding #weddingartist
The last several photos of the wedding signage I hand lettered along with a special picture at the end 🥰✨ Courtney is a true blessing to all of us, and we’re so happy she joined our family. I just love getting to call her my sister-in-law and friend. 💗💗 PC: @kaylasprint 😍 #weddingsignage #weddingcalligraphy #pnwwedding #weddingartist
Do you know that God says this in the Bible? ? Isn’t that so very encouraging? ?? . . . . #painwithpurpose #handletteredtruth #shepaintstruth #watercolorflorals
Do you know that God says this in the Bible? 🥲 Isn’t that so very encouraging? 🩵💛 . . . . #painwithpurpose #handletteredtruth #shepaintstruth #watercolorflorals
Hard to believe it’s already been almost 3 months since my brother’s wedding in February! So excited to share a peek of the wedding signage and calligraphy that was completed by yours truly. ? I’ll never forget what an honor and joy it was to hand letter everything for Curtis and Courtney’s special day! ? There are a few more pics in portrait mode (that couldn’t be added here since these are landscape..), so stay tuned.. I thank God for the strength He gives to my hands because I just love to do custom lettering projects for the people who are dear to my heart! ?❤️ PC: @kaylasprint ? Signage Details: • “save the date” • wedding invitation • reply card • reception “order of events” • chalk hot chocolate bar sign #weddingsignage #weddingcalligraphy #weddingcalligrapher #pnwweddings
Hard to believe it’s already been almost 3 months since my brother’s wedding in February! So excited to share a peek of the wedding signage and calligraphy that was completed by yours truly. 🤍 I’ll never forget what an honor and joy it was to hand letter everything for Curtis and Courtney’s special day! 🥰 There are a few more pics in portrait mode (that couldn’t be added here since these are landscape..), so stay tuned.. I thank God for the strength He gives to my hands because I just love to do custom lettering projects for the people who are dear to my heart! 🥲❤️ PC: @kaylasprint 😍 Signage Details: • “save the date” • wedding invitation • reply card • reception “order of events” • chalk hot chocolate bar sign #weddingsignage #weddingcalligraphy #weddingcalligrapher #pnwweddings
All throughout the Bible, I keep discovering more and more verses like this one—and I love how the Lord has such a heart for those who are suffering. What an encouragement to know this. ?❤️ #painwithpurpose #suffering #biblelettering #shepaintstruth
All throughout the Bible, I keep discovering more and more verses like this one—and I love how the Lord has such a heart for those who are suffering. What an encouragement to know this. 😭❤️ #painwithpurpose #suffering #biblelettering #shepaintstruth
| “I will walk by faith, even when I cannot see..” ?? | Hey friends, I’d really appreciate your prayers as I’ve hit a bump in the road. ? I mentioned that I had my port implant surgery last Tuesday the 4th…well, because of my mast cell activation disorder, I’m having a severe allergic reaction to the surgical glue they used. My incision site looks very very bad. ? OHSU dermatology got me in today for an urgent appointment. They’re concerned that my incision could be infected, so they swabbed the site to culture it and also prescribed very strong topical antibiotics and topical steroids. In the meantime, they said this will take several weeks to heal (and I can’t use my port ?) so they placed an urgent order with OHSU Interventional Radiology (IR) to get another PICC line placed. So bummed about that because PICCs itch a ton. ? Please pray that any bacteria at the site won’t attach to my port (if that happens, I could get septic again and need surgery to remove the port)—trying to leave these concerns in the Lord’s hands and not worry. ? Could you also pray that IR will be able to get me in and place a PICC line asap? Because I haven’t been able to use my port, that means I can’t infuse the IV meds/electrolytes that my body needs everyday. Thank you, friends. ? . . . . #suffering #painwithpurpose #walkbyfaith #mitochondrialdisease
| “I will walk by faith, even when I cannot see..” 🎶🤍 | Hey friends, I’d really appreciate your prayers as I’ve hit a bump in the road. 🙁 I mentioned that I had my port implant surgery last Tuesday the 4th…well, because of my mast cell activation disorder, I’m having a severe allergic reaction to the surgical glue they used. My incision site looks very very bad. 😭 OHSU dermatology got me in today for an urgent appointment. They’re concerned that my incision could be infected, so they swabbed the site to culture it and also prescribed very strong topical antibiotics and topical steroids. In the meantime, they said this will take several weeks to heal (and I can’t use my port 😭) so they placed an urgent order with OHSU Interventional Radiology (IR) to get another PICC line placed. So bummed about that because PICCs itch a ton. 😢 Please pray that any bacteria at the site won’t attach to my port (if that happens, I could get septic again and need surgery to remove the port)—trying to leave these concerns in the Lord’s hands and not worry. 🙁 Could you also pray that IR will be able to get me in and place a PICC line asap? Because I haven’t been able to use my port, that means I can’t infuse the IV meds/electrolytes that my body needs everyday. Thank you, friends. 💗 . . . . #suffering #painwithpurpose #walkbyfaith #mitochondrialdisease
He is RISEN ? Have a blessed Easter, friends!! ? . . . . #easter #resurrectionsunday #heisrisen #jesusisking #shepaintstruth #handletteredtruth
He is RISEN 💛 Have a blessed Easter, friends!! 🌷 . . . . #easter #resurrectionsunday #heisrisen #jesusisking #shepaintstruth #handletteredtruth
Waiting to head to the O.R. for my port implant surgery, j-tube replacement, and PICC line removal. This will be surgery #27. ? I’ve had to live with a port/central line since the beginning of 2015, and one of the risks of having a line is sepsis which I’ve experienced 5 separate times so far.. I dread/hate that there’s always the possibility of it happening again in the future, but that’s the reality of living with a mitochondrial disease. ? I know port surgeries aren’t major surgeries (which I’m thankful for!), but it’s still going under general anesthesia each time and having new incisions. So I’m sad that this latest surgery adds to my long list—I have numerous surgical scars all over my body (abdomen, hips, back, legs, chest, wrists, and much more). I’m not just sad, though…I’m thankful, too. I think about how each scar is a reminder to me of God’s grace and how He ALWAYS faithfully carries me through not only these surgeries but also the trials of life in general. I am so happy to have Him with me in this battle! It gets lonely living with a rare disease like mito, but Jesus is with me and for me. ❤️ Anyways, just wanted to share some thoughts while waiting. ?? Every time I get put under anesthesia, it’s always fun for me to try and stay awake as long as possible! ??
Waiting to head to the O.R. for my port implant surgery, j-tube replacement, and PICC line removal. This will be surgery #27. 😢 I’ve had to live with a port/central line since the beginning of 2015, and one of the risks of having a line is sepsis which I’ve experienced 5 separate times so far.. I dread/hate that there’s always the possibility of it happening again in the future, but that’s the reality of living with a mitochondrial disease. 😔 I know port surgeries aren’t major surgeries (which I’m thankful for!), but it’s still going under general anesthesia each time and having new incisions. So I’m sad that this latest surgery adds to my long list—I have numerous surgical scars all over my body (abdomen, hips, back, legs, chest, wrists, and much more). I’m not just sad, though…I’m thankful, too. I think about how each scar is a reminder to me of God’s grace and how He ALWAYS faithfully carries me through not only these surgeries but also the trials of life in general. I am so happy to have Him with me in this battle! It gets lonely living with a rare disease like mito, but Jesus is with me and for me. ❤️ Anyways, just wanted to share some thoughts while waiting. 🫶🏼 Every time I get put under anesthesia, it’s always fun for me to try and stay awake as long as possible! 🤓😉
| But I will hope continually and will praise you yet more and more. Psalm 71:14 ? | #livinghope #philwickham #painwithpurpose #floralartwork
| But I will hope continually and will praise you yet more and more. Psalm 71:14 💜 | #livinghope #philwickham #painwithpurpose #floralartwork
{?S?P?R☘️I?N☔️G?️}
{🪷S🌿P🌻R☘️I🌷N☔️G🌤️}
Never thought I’d be counting down the days till my port implant surgery in a few weeks, but it has been rough dealing with this PICC line in my arm on top of my other daily symptoms—I’m allergic to the plastic piece of the line, so it makes me want to yank the whole thing out. ? My amazing nurse tries her hardest to position the line away from the rash, but it’s a challenge. ? God is faithful, though, and He always pulls me through the hard days. I’m thankful, too, that I get my PICC adhesive dressing changed once a week. I love my nurse! ? . . . . #suffering #painwithpurpose #mitochondrialdisease #piccline #mastcellactivation #godisfaithful
Never thought I’d be counting down the days till my port implant surgery in a few weeks, but it has been rough dealing with this PICC line in my arm on top of my other daily symptoms—I’m allergic to the plastic piece of the line, so it makes me want to yank the whole thing out. 😭 My amazing nurse tries her hardest to position the line away from the rash, but it’s a challenge. 😢 God is faithful, though, and He always pulls me through the hard days. I’m thankful, too, that I get my PICC adhesive dressing changed once a week. I love my nurse! 💜 . . . . #suffering #painwithpurpose #mitochondrialdisease #piccline #mastcellactivation #godisfaithful
Love these beautiful @cityalight lyrics by their song “Yet Not I But Through Christ In Me.” ?? #worship #suffering #painwithpurpose #shepaintstruth
Love these beautiful @cityalight lyrics by their song “Yet Not I But Through Christ In Me.” 🤍🌿 #worship #suffering #painwithpurpose #shepaintstruth
I recently read this verse from Psalms and thought it was so encouraging—I wanted to letter it and share in case some of you are going through a rough time. I was in a very low place in the hospital for sepsis a few weeks ago, crying every day from the severe pain and discomfort in my whole body, but God…. He saved me and pulled me out of it. He is with you and for you if you are in the midst of a hard trial! ❤️ #suffering #painwithpurpose #moderncalligraphy #floralwatercolor #psalms #shepaintstruth
I recently read this verse from Psalms and thought it was so encouraging—I wanted to letter it and share in case some of you are going through a rough time. I was in a very low place in the hospital for sepsis a few weeks ago, crying every day from the severe pain and discomfort in my whole body, but God…. He saved me and pulled me out of it. He is with you and for you if you are in the midst of a hard trial! ❤️ #suffering #painwithpurpose #moderncalligraphy #floralwatercolor #psalms #shepaintstruth
Dear friends & family, this has been a long awaited day!! ? I’m so very excited to announce the launch of my newly revamped Pain With Purpose website!! ? Working with Maisey.co these last several months has been an amazing experience, and I’m so thankful the Lord directed me to them! They made such a beautiful site for me—I absolutely love it and hope you do, too. ?❤️ To see the finished design, the link (painwithpurpose.com) is in my bio and in my IG stories. ?? . . . . #painwithpurpose #websitedesign #blog #mitochondrialdisease #chronicillness #raredisease #godisinthisstory
Dear friends & family, this has been a long awaited day!! 🥰 I’m so very excited to announce the launch of my newly revamped Pain With Purpose website!! 😍 Working with Maisey.co these last several months has been an amazing experience, and I’m so thankful the Lord directed me to them! They made such a beautiful site for me—I absolutely love it and hope you do, too. 🥲❤️ To see the finished design, the link (painwithpurpose.com) is in my bio and in my IG stories. 🫶🏼 . . . . #painwithpurpose #websitedesign #blog #mitochondrialdisease #chronicillness #raredisease #godisinthisstory
I just wanted to thank you all again for your loving care and support when I was in the hospital. ? I’m so blessed to have you all as prayer warriors (not only your prayers, but also your encouraging cards, comments, and DMs)! A little update—I have many doctor appointments ahead, including a consult with my general surgeon on March 1st to discuss the permanent port surgery. P.S. Look at this beautiful arrangement of flowers—it’s so cheery!! Thank you so much, Auntie Karen and Uncle Gary. ? It sure brightened my day!! ?? #suffering #painwithpurpose #mitochondrialdisease
I just wanted to thank you all again for your loving care and support when I was in the hospital. 💚 I’m so blessed to have you all as prayer warriors (not only your prayers, but also your encouraging cards, comments, and DMs)! A little update—I have many doctor appointments ahead, including a consult with my general surgeon on March 1st to discuss the permanent port surgery. P.S. Look at this beautiful arrangement of flowers—it’s so cheery!! Thank you so much, Auntie Karen and Uncle Gary. 😍 It sure brightened my day!! 🥰🌸 #suffering #painwithpurpose #mitochondrialdisease
Definitely wasn’t expecting that I’d be in the ER 3 days after my brother’s wedding, but here I am. ? I do want to thank God for the 17 month streak of no hospitalizations/surgeries—it was soo nice. ? Anyways, I’m here because I have a hole in my central line. ? This line was placed in my chest and enters my heart…I use it daily for very important IV infusions. Due to the hole, it has to be replaced asap because bacteria can enter it and cause a bloodstream infection. It might even be starting to get infected because I’m experiencing a lot of stabbing pain at the site. ? I’m really dehydrated, too, and not feeling well. So I have to get admitted for surgery (not sure when that will be). I wish I didn’t need a central line—I’ve lived with one since 2014. ? My mom and sister are sick, so it’s just me and dad here. The hospital is packed, and they said the ED is basically the hospital now—they’ve remade halls into little stations with beds…that’s how full it is. ? Would appreciate your prayers, and I will keep you posted. ? #suffering #painwithpurpose #mitochondrialdisease
Definitely wasn’t expecting that I’d be in the ER 3 days after my brother’s wedding, but here I am. 😢 I do want to thank God for the 17 month streak of no hospitalizations/surgeries—it was soo nice. 💚 Anyways, I’m here because I have a hole in my central line. 😭 This line was placed in my chest and enters my heart…I use it daily for very important IV infusions. Due to the hole, it has to be replaced asap because bacteria can enter it and cause a bloodstream infection. It might even be starting to get infected because I’m experiencing a lot of stabbing pain at the site. 🙁 I’m really dehydrated, too, and not feeling well. So I have to get admitted for surgery (not sure when that will be). I wish I didn’t need a central line—I’ve lived with one since 2014. 😔 My mom and sister are sick, so it’s just me and dad here. The hospital is packed, and they said the ED is basically the hospital now—they’ve remade halls into little stations with beds…that’s how full it is. 😞 Would appreciate your prayers, and I will keep you posted. 💚 #suffering #painwithpurpose #mitochondrialdisease
Hi friends, I just wanted to thank you all for your love and caring prayers/support after I last posted about the horrible status migrainosus episode I was in. Your prayers carried me through. ❤️ My neurologist put me back on the monoclonal antibody CGRP migraine injection I was receiving (it was stopped for a bit because of trialing a higher dose of another medication)…. Anyways, so thankful the pain is not a level 9 as often, but he still wants me to get that brain MRI as I started recently experiencing some visual disturbance in my left eye. P.S. Just 2 weeks left until my brother’s wedding!! Soo exciting!! ? #kk_polaroidart #painwithpurpose
Hi friends, I just wanted to thank you all for your love and caring prayers/support after I last posted about the horrible status migrainosus episode I was in. Your prayers carried me through. ❤️ My neurologist put me back on the monoclonal antibody CGRP migraine injection I was receiving (it was stopped for a bit because of trialing a higher dose of another medication)…. Anyways, so thankful the pain is not a level 9 as often, but he still wants me to get that brain MRI as I started recently experiencing some visual disturbance in my left eye. P.S. Just 2 weeks left until my brother’s wedding!! Soo exciting!! 😍 #kk_polaroidart #painwithpurpose
Hi friends, I would really appreciate your prayers. For the past 5 days or so, I’ve been in a horrible status migrainosus episode. ? The pain is a 9 (on a scale of 1-10)…it’s just soo bad. ? We’re not sure what’s going on and if it’s due to some medication changes.. So my Seattle headache neurologist adjusted my meds and also ordered another brain MRI (he said it would most likely be normal but wanted to be on the safe side). Could you pray that this migraine episode will break soon? I don’t want to feel like this on my brother’s upcoming wedding. ? Migraines in general are exhausting, but put it on top of mitochondrial disease, and it’s a rough combination…I’ve been so drowsy everyday because this episode is using up so much energy. ? Could you also pray that I won’t have a mito crash from all this bodily stress.. So thankful for you all—I love you. P.S. This is my new Pain with Purpose logo, and I can’t wait to share some exciting news. ❤️ #suffering #mitochondrialdisease #intractablemigraine #painwithpurpose
Hi friends, I would really appreciate your prayers. For the past 5 days or so, I’ve been in a horrible status migrainosus episode. 😔 The pain is a 9 (on a scale of 1-10)…it’s just soo bad. 😭 We’re not sure what’s going on and if it’s due to some medication changes.. So my Seattle headache neurologist adjusted my meds and also ordered another brain MRI (he said it would most likely be normal but wanted to be on the safe side). Could you pray that this migraine episode will break soon? I don’t want to feel like this on my brother’s upcoming wedding. 😢 Migraines in general are exhausting, but put it on top of mitochondrial disease, and it’s a rough combination…I’ve been so drowsy everyday because this episode is using up so much energy. 😭 Could you also pray that I won’t have a mito crash from all this bodily stress.. So thankful for you all—I love you. P.S. This is my new Pain with Purpose logo, and I can’t wait to share some exciting news. ❤️ #suffering #mitochondrialdisease #intractablemigraine #painwithpurpose
I love this quote by Randy Alcorn—soo encouraging. I can’t wait for the day when there will be no more pain and suffering. ❤️? #painwithpurpose #kk_polaroidart
I love this quote by Randy Alcorn—soo encouraging. I can’t wait for the day when there will be no more pain and suffering. ❤️🥹 #painwithpurpose #kk_polaroidart
Dear friends, wishing you all a wonderful new year! ?? I don’t know what 2023 will bring, but I’m thankful to have you along for the ride! ✨ Swipe left to see my family’s Christmas photo and read my annual “reflections” post. ❤️? . . . . #happynewyear #2023 #family #love #reflections #painwithpurpose
Dear friends, wishing you all a wonderful new year! 🥰🎉 I don’t know what 2023 will bring, but I’m thankful to have you along for the ride! ✨ Swipe left to see my family’s Christmas photo and read my annual “reflections” post. ❤️🤗 . . . . #happynewyear #2023 #family #love #reflections #painwithpurpose
| The incarnation is the miracle of miracles; that He who is the Infinite should become an infant. ✨ Charles Spurgeon | I hope you’re having a wonderful Christmas, friends. ?? My family and I are excited to celebrate on the 29th as both of my brothers are on duty today. ? #christmasday #christmaslettering
| The incarnation is the miracle of miracles; that He who is the Infinite should become an infant. ✨ Charles Spurgeon | I hope you’re having a wonderful Christmas, friends. 🎄🥰 My family and I are excited to celebrate on the 29th as both of my brothers are on duty today. 💙 #christmasday #christmaslettering
“Glory to God in the highest, and on earth peace among those with whom he is pleased!” Luke 2:14 ❤️? #christmaslettering #peaceonearth
“Glory to God in the highest, and on earth peace among those with whom he is pleased!” Luke 2:14 ❤️💚 #christmaslettering #peaceonearth
I’ve been busy lettering all the signs for my brother’s upcoming wedding (which I absolutely love doing!! ?), so I haven’t posted in a while.. But here’s a little piece I created a few days ago.. ?? #oholynight #christmaslettering #christmastreeart
I’ve been busy lettering all the signs for my brother’s upcoming wedding (which I absolutely love doing!! 💗), so I haven’t posted in a while.. But here’s a little piece I created a few days ago.. 🥰🎄 #oholynight #christmaslettering #christmastreeart
Happy Thanksgiving, friends!! ? As I continue on this journey with Mitochondrial DNA Depletion Syndrome, I just wanted to say that I’m so grateful for YOU! ❤️ This trial weighs heavily on my shoulders, but you truly help hold it up. I am incredibly blessed by your love, support, and prayers!! ? #givethanks #thanksgiving #painwithpurpose #godisgood
Happy Thanksgiving, friends!! 🥰 As I continue on this journey with Mitochondrial DNA Depletion Syndrome, I just wanted to say that I’m so grateful for YOU! ❤️ This trial weighs heavily on my shoulders, but you truly help hold it up. I am incredibly blessed by your love, support, and prayers!! 🤗 #givethanks #thanksgiving #painwithpurpose #godisgood
Love this beautiful quote. ? My mom’s dear friend from nursing school shared this with me a while back. ? | Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope… Romans 5:3-4 ? | #kk_polaroidart #painwithpurpose #suffering #letteringart
Love this beautiful quote. 💜 My mom’s dear friend from nursing school shared this with me a while back. 😍 | Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope… Romans 5:3-4 🤍 | #kk_polaroidart #painwithpurpose #suffering #letteringart
| “Be strong and take heart, all you who hope in the Lord.” Psalms‬ ‭31‬:‭24‬ | It’s been almost a whole month since I last posted. Still dealing with horrible migraines every day, even with the treatment plan my headache neurologist put me on. I see him again next month. But in the meantime, I’m getting desperate and will be starting specialized acupuncture at the OHSU Comprehensive Pain Center in a couple weeks. This verse is a good reminder for me. I just want to say, if you’re going through something similar, put your hope in the Lord, friends. ❤️ He is for you and with you when all else fails!! #takeheart #suffering #painwithpurpose #psalms
| “Be strong and take heart, all you who hope in the Lord.” Psalms‬ ‭31‬:‭24‬ | It’s been almost a whole month since I last posted. Still dealing with horrible migraines every day, even with the treatment plan my headache neurologist put me on. I see him again next month. But in the meantime, I’m getting desperate and will be starting specialized acupuncture at the OHSU Comprehensive Pain Center in a couple weeks. This verse is a good reminder for me. I just want to say, if you’re going through something similar, put your hope in the Lord, friends. ❤️ He is for you and with you when all else fails!! #takeheart #suffering #painwithpurpose #psalms
Starting my #kk_polaroidart series back up again! ☺️ This verse from the book of Isaiah is so very encouraging. ? Growing up, remember how comforting it was whenever we would hold our mom or dad’s hand? Well, in the same way, we don’t have to be afraid in times of fear or trial because the Lord holds our hand and helps us. ❤️ . . . #suffering #painwithpurpose #scriptureart
Starting my #kk_polaroidart series back up again! ☺️ This verse from the book of Isaiah is so very encouraging. 📖 Growing up, remember how comforting it was whenever we would hold our mom or dad’s hand? Well, in the same way, we don’t have to be afraid in times of fear or trial because the Lord holds our hand and helps us. ❤️ . . . #suffering #painwithpurpose #scriptureart
Hey friends, If you’re interested, I wrote an update on my recent neurology appointment in Seattle.. The link is in my stories and in my bio. ?❤️ . . . #suffering #painwithpurpose #mitochondrialdisease #chronicpain
Hey friends, If you’re interested, I wrote an update on my recent neurology appointment in Seattle.. The link is in my stories and in my bio. 🤗❤️ . . . #suffering #painwithpurpose #mitochondrialdisease #chronicpain
Recently, I had the absolute privilege and honor of hand lettering the “save the date” invite for my brother and future sister-in-law! ? It was such a joy to create this for them! ? Their engagement photo by @kaylasprint is so beautiful!! ? . . . . #savethedate #wedding #love #family #calligraphy
Recently, I had the absolute privilege and honor of hand lettering the “save the date” invite for my brother and future sister-in-law! 🥰 It was such a joy to create this for them! 🤍 Their engagement photo by @kaylasprint is so beautiful!! 😍 . . . . #savethedate #wedding #love #family #calligraphy
Day 30 | Psalm 7:10 We reached the end of my “30 days of Psalms” series! ☺️?? Yayy!! This month 5 years ago, I started learning how to hand letter. ?✍? I took numerous online courses from many different teachers. On this continuous journey living with mitochondrial disease and my other diagnoses for 12 years now, I never imagined how therapeutic and encouraging it would be to letter Bible verses and uplifting quotes during these hard trials. In turn, I hope and pray that the art I’ve shared these past 5 years has blessed and encouraged all of you as well! ❤️❤️ . . . #kk_30daysofpsalms #30daysofbiblelettering
Day 30 | Psalm 7:10 We reached the end of my “30 days of Psalms” series! ☺️🙌🏻 Yayy!! This month 5 years ago, I started learning how to hand letter. 😍✍🏻 I took numerous online courses from many different teachers. On this continuous journey living with mitochondrial disease and my other diagnoses for 12 years now, I never imagined how therapeutic and encouraging it would be to letter Bible verses and uplifting quotes during these hard trials. In turn, I hope and pray that the art I’ve shared these past 5 years has blessed and encouraged all of you as well! ❤️❤️ . . . #kk_30daysofpsalms #30daysofbiblelettering
Day 29 | Psalm 56:4 ? #kk_30daysofpsalms #30daysofbiblelettering
Day 29 | Psalm 56:4 🌸 #kk_30daysofpsalms #30daysofbiblelettering
Day 28 | Psalm 62:8 ? #kk_30daysofpsalms #30daysofbiblelettering
Day 28 | Psalm 62:8 🤍 #kk_30daysofpsalms #30daysofbiblelettering
Day 27 | Psalm 59:10 ? We’re getting closer to the home stretch! Just 3 days left! ☺️ #kk_30daysofpsalms #30daysofbiblelettering
Day 27 | Psalm 59:10 🪴 We’re getting closer to the home stretch! Just 3 days left! ☺️ #kk_30daysofpsalms #30daysofbiblelettering
Day 26 | Psalm 121:5 ? #kk_30daysofpsalms #30daysofbiblelettering
Day 26 | Psalm 121:5 💜 #kk_30daysofpsalms #30daysofbiblelettering
Day 25 | Psalm 116:5 ?? #kk_30daysofpsalms #30daysofbiblelettering
Day 25 | Psalm 116:5 😊🤍 #kk_30daysofpsalms #30daysofbiblelettering
Day 24 | Psalm 118:6 ? #kk_30daysofpsalms #30daysofbiblelettering
Day 24 | Psalm 118:6 🌸 #kk_30daysofpsalms #30daysofbiblelettering
Day 23 | Psalm 94:22 ? #kk_30daysofpsalms #30daysofbiblelettering
Day 23 | Psalm 94:22 🏞 #kk_30daysofpsalms #30daysofbiblelettering
Day 22 | Psalm 112:4 ? #kk_30daysofpsalms #30daysofbiblelettering
Day 22 | Psalm 112:4 🌟 #kk_30daysofpsalms #30daysofbiblelettering
Day 21 | Psalm 138:8 ❤️ #kk_30daysofpsalms #30daysofbiblelettering
Day 21 | Psalm 138:8 ❤️ #kk_30daysofpsalms #30daysofbiblelettering
Day 20 | Psalm 147:6 ? #kk_30daysofpsalms #30daysofbiblelettering
Day 20 | Psalm 147:6 🪷 #kk_30daysofpsalms #30daysofbiblelettering
Day 19 | Psalm 145:14 ? #kk_30daysofpsalms #30daysofbiblelettering
Day 19 | Psalm 145:14 🍂 #kk_30daysofpsalms #30daysofbiblelettering
Day 18 | Psalm 41:1 I lettered this verse a while ago, not realizing that it would land on the first day of World Mitochondrial Disease Awareness 2022. ??? When my symptoms first started, it took many longs months to finally get answers. My neuro metabolic specialist in San Diego diagnosed me with Mitochondrial DNA Depletion Syndrome, a disorder I had never heard of back then. I have symptoms in almost every body system because mitochondria are the power houses that provide energy (ATP) for all the organs. I have a central line for daily IV infusions and a feeding tube in my abdomen. I have had 20+ surgeries and countless scans, tests, hospital stays, appointments, and physical therapy. It truly is a full time job! Like the verse above, I just wanted to share that God has faithfully delivered me through all the highs and lows of living with a progressive condition like mito which has no cure. And He continues to do so to this day. When I am weak (physically, mentally, or spiritually), He is strong! ?? . . . #kk_30daysofpsalms #30daysofbiblelettering
Day 18 | Psalm 41:1 I lettered this verse a while ago, not realizing that it would land on the first day of World Mitochondrial Disease Awareness 2022. 💚🌎🧬 When my symptoms first started, it took many longs months to finally get answers. My neuro metabolic specialist in San Diego diagnosed me with Mitochondrial DNA Depletion Syndrome, a disorder I had never heard of back then. I have symptoms in almost every body system because mitochondria are the power houses that provide energy (ATP) for all the organs. I have a central line for daily IV infusions and a feeding tube in my abdomen. I have had 20+ surgeries and countless scans, tests, hospital stays, appointments, and physical therapy. It truly is a full time job! Like the verse above, I just wanted to share that God has faithfully delivered me through all the highs and lows of living with a progressive condition like mito which has no cure. And He continues to do so to this day. When I am weak (physically, mentally, or spiritually), He is strong! 💚💚 . . . #kk_30daysofpsalms #30daysofbiblelettering
Day 17 | Psalm 138:7 ✨ #kk_30daysofpsalms #30daysofbiblelettering
Day 17 | Psalm 138:7 ✨ #kk_30daysofpsalms #30daysofbiblelettering
Day 16 | Psalm 55:16 ? #kk_30daysofpsalms #30daysofbiblelettering
Day 16 | Psalm 55:16 🪴 #kk_30daysofpsalms #30daysofbiblelettering
Day 15 | Psalm 69:33 ? #kk_30daysofpsalms #30daysofbiblelettering
Day 15 | Psalm 69:33 🐚 #kk_30daysofpsalms #30daysofbiblelettering
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asked QUESTIONS

Is there a cure for Mitochondrial DNA Depletion Syndrome?

With your current condition, how do you seek to minister to people?

As you walk this path daily, what helps you keep trusting in the Lord?
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asked QUESTIONS

  • Is there a cure for Mitochondrial DNA Depletion Syndrome?

    I keep up with the latest clinical trials through the updates given by the United Mitochondrial Disease Foundation, but as of yet, there is sadly no cure and only symptomatic treatment. :(  I am on numerous oral medications and push liquid meds through my jejunostomy feeding tube.  I have a permanent central line in my chest to receive daily vital IV infusions/medications.  I also use an adaptive-servo ventilator at night for my central & obstructive sleep apnea.

  • With your current condition, how do you seek to minister to people?

    Because I have fatigue, chronic pain, and other health problems related to my condition, I struggled with the fact that I couldn’t do much.  I truly felt useless that I couldn’t work and have a job, I couldn’t play my violin on the worship team at church anymore, I couldn’t help in the nursery, etc.  So I asked myself, “What CAN I do instead?”  The answer came quickly!  I could pray!  I was following a lot of blogs of babies and little kids with cancer, congenital heart disease, or other rare conditions like mito because it kept giving me a perspective that there are people everywhere we look who are going through suffering, so I began praying for them and the people at my church. :)  In addition, I came across an artist who was teaching hand lettering online for free!  I started learning how to the letter more than five years ago, and God has given physical strength to my hands to letter Bible verses or other uplifting quotes.  It feels like the Lord specifically placed this in my lap as a ministry to share my art with other believers going through hard times or even with strangers online. :)


  • As you walk this path daily, what helps you keep trusting in the Lord?

    In one word, Jesus.  People sometimes come up to me and say they don’t know how I do it.  And to tell you the truth, I don’t do it.  Jesus does.  Every day, I physically feel my broken body, and I am helpless without him.  When I am weak, he is strong.  I know God chose this path for me before I was born.  And whenever it gets overwhelming or discouraging, I trade in my pain for purpose, cast my cares at his feet, and think of something in the past that was hard to go through because it’s a reminder that God carried me through that specific trial.


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